Psychiatric Nonadherence A Solutions-Based Approach by Victor Fornari, Ida Dancyger

Psychiatric
Nonadherence
A Solutions-Based Approach
Victor Fornari
Ida Dancyger
Editors
123
Psychiatric Nonadherence
Victor Fornari • Ida Dancyger
Editors
Psychiatric Nonadherence
A Solutions-Based Approach
Editors
Victor Fornari Ida Dancyger
Northwell School of Medicine Northwell School of Medicine
North Shore Long Island Jewish Health Sy North Shore Long Island Jewish Health Sy
Hempstead, NY Hempstead, NY
USA USA
ISBN 978-3-030-12664-3 ISBN 978-3-030-12665-0 (eBook)

https://doi.org/10.1007/978-3-030-12665-0
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Foreword
Anecdotal observations early on in my career, of patients who would not follow

advice, alerted me to something that I was interested in and concerned about. This
was especially true, when, as a child and adolescent psychiatry fellow, I was asked
to meet with the mother of a premature infant who had several apneic episodes
while in the neonatal intensive care unit (NICU). Once discharged from the hospi-
tal, the mother would dutifully bring the child for follow-up. There were no further
apneic episodes. The newborn had been prescribed an infant home apnea monitor to
alert the caregivers of any concerns. A neonatologist caring for the infant asked me
to meet with the mother whom he described as “nuts.” An appointment was arranged
for the mother to come in to see me. At that meeting, I was struck by how lovely and
sophisticated the mother actually was. I did not detect anything out of the ordinary.
Upon greeting me, the mother exclaimed that she knew that the neonatologist
thought she was crazy. I nodded in agreement. I asked the mother to please tell me
her story.
This individual had been a career-oriented professional working long hours on
Wall Street following the completion of her MBA. By the time she was in her mid-
30s, she recognized that if she wished to have a family of her own, it was time to
find a husband. After a period of dating, the woman became engaged and then mar-
ried, by the time she was 38 years old. Eager to start her family, they agreed to try
and have a baby. After several months, the woman became pregnant. Due to
advanced maternal age, an amniocentesis was recommended. The outcome was a
trisomy for which the woman chose to have a termination of pregnancy. Now,
almost 40 years old, her anxiety was heightened. Following several months, she
became pregnant and was elated. In the seventh week of pregnancy, she had a mis-
carriage. Tension between the couple rose and her preoccupation with starting a
family increased. The husband offered an ultimatum: “one more try, then I am
done.” Anxious at the prospect of not having her own family, the couple proceeded
to conceive for the third time. At 28 weeks of gestation, she went into premature
labor and was admitted to the hospital for bed rest. Despite this, a baby girl was born
at 29 weeks, at a birth weight of 1200 g. The baby was admitted to the NICU where
she proceeded to have two apneic episodes during the first week of life. The preemie
was placed on an apnea monitor and the rest of the hospital course was uneventful.
The mother spent much of each day in the NICU, looking at her baby, touching the
baby, eventually holding and then feeding her daughter. When the day arrived for
v
vi Foreword
the infant to go home, the mother was apprehensive and asked for a few more days
of inpatient care.
Anxious, the couple took their daughter home at 2500 g and had the support of a
baby nurse in their apartment for the first 4 weeks that the child was at home. The
child would be attached to the infant home monitor when asleep. By the sixth month
of age, the neonatologist in the neonatal intensive care follow-up clinic advised the
mother that the monitor was no longer medically necessary; however, the mother
continued to utilize it. By 12 months of age, the neonatologist advised the mother to
bring the monitor back to the clinic. Despite the monthly rental fee, the mother
refused to return the monitor.
With tears in her eyes, the mother described how this child was her last chance
of becoming a biological mother. Nothing would take away her infant from her,
certainly not the neonatologist. I concurred with her decision to hold onto the moni-
tor, recognizing that it was her symbolic life jacket. I suggested that she could dis-
continue attaching the electrodes but simply leave the monitor on the dresser not
plugged in. I saw the woman the following month when she returned to see me for
a follow-up. The woman reported to me that she had indeed disconnected the moni-
tor even though it did not make sense to her and left the monitor on the dresser. I
acknowledged her ability to heed my advice. I told her that I would not return the
monitor provided that she was prepared to pay the rental fee. I suggested that she put
the monitor in its box and put the box in the closet at the top shelf. Smiling, I recom-
mended that when the child would go to college, I would put the box with the moni-
tor in the dorm room closet. The mother smiled and told me that she knew I
understood.
Several weeks later, I bumped into the neonatologist in the cafeteria. He asked
whether I had met again with the “crazy” mom. I told him that I had seen her twice.
I explained that I suggested she keep the monitor and that I told the mother that I
would not have returned the monitor either. Baffled at my suggestion, the neona-
tologist exclaimed that I was “crazier than the mother.”
As this volume was being prepared, I thought a lot about this mother and my
understanding of her and her narrative. I recognized that her doctor did not under-
stand her. I realized that what was misunderstood as nonadherence or noncompli-
ance was actually a physician not listening to his patient and the patient not being
understood.
Hempstead, NY, USA Victor Fornari

Preface
Acceptance of a psychiatric diagnosis and its subsequent treatment and the patient’s
adherence to the therapeutic recommendations may present significant clinical chal-
lenges. The path to recovery is often in strong opposition to the patient’s desires and
beliefs. Various approaches to engage the patient will be discussed in this book. We
examine the five factors (social and economic, health-care team and system-related,
condition-related, therapy-related, and patient-related factors) contributing to non-
adherence and offer strategies from clinical practice and expertise, as well as some
research findings.
In the first part of the book, “mental health treatment nonadherence”, Martini and
Attallah review the hidden costs of mental illness. This is followed by a series of
five chapters reflecting the range of psychiatric nonadherence across the life cycle.
Blader describes nonadherence in childhood disorders, with attention deficit disor-
der as the clinical example. Subsequently, we review nonadherence in the treatment
of adolescents with anorexia nervosa. Lawrence and Dixon review the challenges of
nonadherence with individuals with schizophrenia, often first manifesting during
late adolescence and early adulthood. Bardin, Cheney, and Braider report on increas-
ing psychiatric treatment engagement and adherence in the college population.
Subsequently, Freudenberg-Hua and her colleagues describe a review of nonadher-
ence to treatment in the geriatric population.
The second part of this volume is devoted to “what makes a good doctor”.
Pearlman and Chou describe communication skills, often lacking in medical educa-
tion, on specific training to enhance patient adherence. Weissman, Fornari, and
Branch report on enhancing humanism for practitioners and its impact on medical
treatment. Marcus and Sharon describe the use of narrative medicine to enhance the
doctor-patient relationship and engage the treatment-resistant patient.
The third and final part of this volume is devoted to “solving the dilemma of
psychiatric nonadherence”. These six chapters present a range of strategies address-
ing clinical practices in order to achieve the desired outcomes. Byrnes and Payne
describe treatment adherence from the dialectical behavior therapy perspective.
Smith and Kaye describe collaborative care, an effort to increase behavioral health
adherence by working directly with the primary care physician. Kapoor and
Goldman outline the technique of motivational interviewing for improving psychi-
atric adherence. Higdon, Eichenbaum, and Delbello report on pragmatic research
trials as a means of developing evidence that can be applied to our real-world
vii
viii Preface
patients in order to enhance adherence. Sengupta and Adragna summarize the bur-
geoning field of technological advances to address psychiatric nonadherence.
Finally, we propose a psychiatric nonadherence checklist as a means to close the
gap and offer future directions of where we go from here.
We are honored that so many leading experts in the field of psychiatry graciously
and generously contributed to this volume. There continues to be progress in the
field with the goal of increasing the strength of the evidence to provide for clinical
practice. There have been developments across the range of treatment modalities,
and the authors have reviewed and incorporated the latest research and information
into their chapters.
We are enormously grateful to the over 30 contributing authors for their unwav-
ering commitment to excellence, their enthusiasm, as well as the time and effort
each has given to the work of creating the chapters for this book.
In addition, we wish to express our deep appreciation to our families for their
continued support throughout the preparation of this manuscript.
Hempstead, NY, USA Victor Fornari

Hempstead, NY, USA Ida Dancyger
Contents
Part I Mental Health Treatment Nonadherence

1 Health Economics: The Hidden Costs of Mental Illness�� 3
D. Richard Martini and Tammer Attallah
2 Nonadherence in Childhood Disorders:
Attention-Deficit/Hyperactivity Disorder�� 17
Joseph C. Blader
3 Coming of Age and Refusing to Eat: Overcoming Treatment
Nonadherence for Adolescents with Anorexia Nervosa�� 31
Victor Fornari and Ida Dancyger
4 The Challenge of Nonadherence in Schizophrenia �� 43
Ryan E. Lawrence and Lisa Dixon
5 Increasing Psychiatric Treatment Engagement and Adherence
in the College Population�� 59
Althea Bardin, Brianna Cheney, and Laura Braider
6 Medication Nonadherence in the Geriatric Psychiatric Population:
Do Seniors Take Their Pills? �� 81
Yun Freudenberg-Hua, Ryan Kaufman, Antonia Alafris, Sukriti
Mittal, Neil Kremen, and Erika Jakobson
Part II What Makes a Good Doctor?

7 Communication Skills Training to Enhance Patient Adherence �� 103
R. Ellen Pearlman and Calvin Chou
8 Humanism and Medical Treatment: Clinicians and Patients
Finding Common Ground�� 113
Peter Weissmann, Alice Fornari, and William T. Branch Jr.
9 Narrative Medicine and the Treatment-Resistant Patient �� 129
Eric R. Marcus and Rita Charon
ix
x Contents
Part III Solving the Dilemma

10 Treatment Adherence from the Perspective of Dialectical Behavior
Therapy: Sitting in the Boat and Staying the Course�� 145
Jennifer H. Byrnes and Adam C. Payne
11 Collaborative Care: An Effort to Increase Behavioral Health
Adherence by Supporting the Primary Care Provider�� 165
Beth A. Smith and David L. Kaye
12 The Spirit of Motivational Interviewing for Psychiatric
Nonadherence �� 177
Sandeep Kapoor and Bruce Goldman
13 Pragmatic Trials: Solving the Dilemma of Psychiatric
Claudine Higdon, Rebecca M. Eichenbaum, and Melissa P. DelBello
14 Technological Strategies to Address Psychiatric
Sourav Sengupta and Michael Adragna
15 Closing the Gap: Where Do We Go from Here? �� 213
Index�� 217
Contributors
Michael Adragna, MD Jacobs School of Medicine at State University of New York

at Buffalo, Buffalo, NY, USA
Antonia Alafris, Pharm D, CGP Donald and Barbara Zucker School of Medicine
at Hofstra/Northwell, Hempstead, NY, USA
Pharmacy and Clinical Services (Behavioral Health), Zucker Hillside Hospital,
Glen Oaks, NY, USA
Tammer Attallah, MBA, LCSW Primary Children’s Hospital, Salt Lake City,
UT, USA
Althea Bardin Zucker Hillside Hospital, Northwell Health, Glen Oaks, NY, USA
Joseph C. Blader, PhD Meadows Foundation & Semp Russ Professor of Child
Psychiatry, Departments of Psychiatry and Pediatrics, University of Texas Health
Science Center at San Antonio, San Antonio, TX, USA
Laura Braider, PhD Northwell Health’s Behavioral Health College Partnership,
Zucker School of Medicine at Hofstra/Northwell Ambulatory Psychiatry Center,
Glen Oaks, NY, USA
Zucker Hillside Hospital, Northwell Health, Glen Oaks, NY, USA
William T. Branch Jr., MD Division of General Internal Medicine and Geriatrics,
Department of Medicine, Emory University School of Medicine, Atlanta, GA, USA
Jennifer H. Byrnes, PhD Center for Cognitive and Dialectical Behavior Therapy,
Lake Success, NY, USA
Rita Charon, MD, PhD Medical Humanities and Ethics and of Medicine at the
Columbia University Medical Center, New York, NY, USA
Department of Medical Humanities and Ethics, Columbia University College of
Physicians and Surgeons, New York, NY, USA
Brianna Cheney Zucker Hillside Hospital, Northwell Health, Glen Oaks, NY, USA
xi
xii Contributors
Calvin Chou, MD, PhD, FACH University of California, San Francisco, CA, USA
Ida Dancyger, PhD Division of Child and Adolescent Psychiatry, Department of
Psychiatry, North Shore University Hospital and The Long Island Jewish Medical
Center (Including The Zucker Hillside Hospital and Cohen Children’s Medical
Center), Glen Oaks, NY, USA
Donald and Barbara Zucker School of Medicine at Hofstra/Northwell, Hempstead,
NY, USA
Melissa P. DelBello, MD, MS Department of Psychiatry and Behavioral
Neuroscience, University of Cincinnati College of Medicine, Cincinnati, OH, USA
Lisa Dixon, MD, MPH Division of Behavioral Health Services and Policy
Research and Center for Practice Innovations, Columbia University Medical Center,
New York State Psychiatric Institute, New York, NY, USA
Rebecca M. Eichenbaum, MD Donald and Barbara Zucker School of Medicine at
Hofstra/Northwell, Hempstead, NY, USA
Zucker School of Medicine at Hofstra-Northwell, Hempstead, NY, USA
Alice Fornari, EdD, RD Donald and Barbara Zucker School of Medicine at
Northwell Health Organization, New Hyde Park, NY, USA
Victor Fornari, MD, MS Division of Child and Adolescent Psychiatry, Department
of Psychiatry, North Shore University Hospital and The Long Island Jewish Medical
Center (Including The Zucker Hillside Hospital and Cohen Children’s Medical
Center), Glen Oaks, NY, USA
Donald and Barbara Zucker School of Medicine at Hofstra/Northwell, Hempstead,
NY, USA
Yun Freudenberg-Hua, MD Donald and Barbara Zucker School of Medicine at
Center for Alzheimer’s Disease, Feinstein Institute for Medical Research, Manhasset,
NY, USA
Division of Geriatric Psychiatry, Zucker Hillside Hospital, Glen Oaks, NY, USA
Bruce Goldman, LCSW, CASAC Donald and Barabara Zucker School of
Medicine at Hofstra/Northwell, Hempstead, NY, USA
The Zucker Hillside Hospital, Glen Oaks, NY, USA
Addiction Services, The Zucker Hillside Hospital, Glen Oaks, NY, USA
Claudine Higdon, MD Child and Adolescent Outpatient Psychiatry Department,
Northwell Health, Zucker Hillside Hospital, Glen Oaks, NY, USA
Contributors xiii
Erika Jakobson, DO Donald and Barbara Zucker School of Medicine at Hofstra/

Northwell, Hempstead, NY, USA
Sandeep Kapoor, MD, MS-HPPL Donald and Barabara Zucker School of
Medicine at Hofstra/Northwell, Hempstead, NY, USA
Division of General Internal Medicine, Northwell Health, New Hyde Park, NY, USA
Ryan Kaufman Donald and Barbara Zucker School of Medicine at Hofstra/
Psychiatry Residency Program, Zucker Hillside Hospital, Glen Oaks, NY, USA
David L. Kaye, MD University at Buffalo School of Medicine, Erie County
Medical Center, Department of Psychiatry, Buffalo, NY, USA
Department of Psychiatry, State University of New York at Buffalo, New York,
NY, USA
Neil Kremen, MD Donald and Barbara Zucker School of Medicine at Hofstra/
Ryan E. Lawrence, MD Columbia University Medical Center, New York –
Presbyterian Hospital Allen Hospital, New York, NY, USA
Eric R. Marcus, MD Columbia University College of Physicians and Surgeons,
Supervising and Training Analyst, Columbia University Center for Psychoanalytic
Training and Research, New York, NY, USA
D. Richard Martini, MD Division of Pediatric Psychiatry and Behavioral Health,
Department of Pediatrics, University of Utah School of Medicine, Salt Lake City, UT,
USA
Department of Psychiatry and Behavioral Health, Primary Children’s Hospital, Salt
Lake City, UT, USA
Primary Children’s Hospital, Salt Lake City, UT, USA
Sukriti Mittal, MD Donald and Barbara Zucker School of Medicine at Hofstra/
Adam C. Payne, PhD Center for Cognitive and Dialectical Behavior Therapy,
Lake Success, NY, USA
R. Ellen Pearlman, MD, FACH Donald and Barbara Zucker School of Medicine
at Hofstra/Northwell, Hempstead, NY, USA
xiv Contributors
Sourav Sengupta, MD, MPH Jacobs School of Medicine at State University of

New York at Buffalo, Buffalo, NY, USA
Beth A. Smith, MD Division Chief, Child and Adolescent Psychiatry, University
at Buffalo School of Medicine, Kaleida Health, Children’s Psychiatric Clinic,
Buffalo, NY, USA
Department of Psychiatry, State University of New York at Buffalo, New York,
NY, USA
Department of Pediatrics, State University of New York at Buffalo, New York, NY, USA
Peter Weissmann, MD University of Minnesota Medical School, Minneapolis,
MN, USA
Part I
Mental Health Treatment Nonadherence
Health Economics: The Hidden Costs
of Mental Illness 1
D. Richard Martini and Tammer Attallah
Introduction
In this introductory chapter on psychiatric nonadherence, it is critical to appreciate

that mental illness is frequently complicated by challenges to adherence to the treat-
ment plan. Direct costs for healthcare and for the care of psychiatric disorders con-
tinue to rise at an unprecedented rate. From 1996 through 2013, the annual growth
rate for mental health expenditures was 7%, while, during that same period, the
United States had an annual inflation rate of 3%. Much energy is focused on under-
standing those costs, and the prioritization, when allocating resources to these direct
costs, continues to be a challenge. However, focusing on direct costs alone is insuf-
ficient when considering the total burden of mental health disorders. In order to
better understand the burden of psychiatric disease, we need to consider direct, indi-
rect, and hidden costs for the patient, family, and society [1].
Psychiatric disorders present significant public health challenges nationally and
globally. In the United States, costs to treat psychiatric disorders are disbursed
through a patchwork of marginally coordinated systems that span a range of ser-
vices from hospital based to community based. The cost to deliver psychiatric care
within the United States is annually over $150 billion, and globally the cost is esti-
mated to be over $800 billion. When compared to the total expense of healthcare,
D. R. Martini (*)
Division of Pediatric Psychiatry and Behavioral Health, Department of Pediatrics,
University of Utah School of Medicine, Salt Lake City, UT, USA
Department of Psychiatry and Behavioral Health, Primary Children’s Hospital,
Salt Lake City, UT, USA
e-mail: richard.martini@hsc.utah.edu
T. Attallah
e-mail: tammer.attallah@imail.org
© Springer Nature Switzerland AG 2019 3

V. Fornari, I. Dancyger (eds.), Psychiatric Nonadherence,
https://doi.org/10.1007/978-3-030-12665-0_1
4 D. R. Martini and T. Attallah
psychiatric care represents 5% and 10%, respectively, of the entire direct care costs
and primarily includes medications, office visits, and inpatient hospitalization.
However, the hidden costs of psychiatric disorders are more difficult to delineate,
but are nevertheless significant, and include income loss due to mortality, disability,
and need for custodial care and lost production at work due to absence and early
retirement [2]. When considered together, these costs are over twice the direct
expense of mental illness and total over $300 billion nationally and $1.7 trillion
globally.
Understanding these hidden costs provides a broader perspective on the full eco-
nomic burden of psychiatric disorders. Precision when identifying these hidden
costs is challenging in part because the impact of these factors is difficult to mea-
sure. In an effort to develop models that better explain these hidden costs, the World
Economic Forum (WEF) describes multiple approaches used to quantify the eco-
nomic disease burden [3].
Human Capital
This approach addresses the personal impact of disease and considers the direct
costs of diagnosis and treatment and the indirect or hidden costs associated with lost
production, income loss due to disability and mortality, early retirement, and the
need for chronic support from family and caregivers. The limitation to this approach,
however, is that it does not take into account the other personal costs that are the
consequences of society’s approach to mental illness, including incarceration, poor
education, and the need for a social services safety net through public housing, food
stamps, and income support [2].
Lost Economic Growth
This approach considers the projected impact of psychiatric disease on the gross
domestic product (GDP). Economic growth depends on both capital and labor,
and mental health disorders have a negative impact on an individual’s ability to
positively contribute to both. In addition, psychiatric disorders consume capital
through the healthcare expenditures and deplete the work force through disability
and early mortality. One method used to determine the lost economic output is a
calculation of the disability-adjusted life years (DALY) across each medical con-
dition [2]. A second is to look at the relative size of the population with psychiat-
ric disorders and determine economic impact by comparing it to populations with
other diseases. An analysis made by the WEF concluded that between 2011 and
2030, the cumulative economic output loss associated with mental disorders will
be US$ 6.3 trillion worldwide, making the economic output loss related to mental
disorders comparable to that of cardiovascular diseases and higher than that of
cancer, chronic respiratory diseases, and diabetes [4].
1 Health Economics: The Hidden Costs of Mental Illness 5
The WEF developed these models to better understand the broad economic bur-
den of physical and psychiatric disease. The figures listed above demonstrate the
importance of a broad analysis of the multiple costs of psychiatric disorders. When
considering the unique hidden costs of psychiatric disorders, multiple factors need
to be considered to fully appreciate the extent of the financial impact.
Medical Conditions
Psychiatric diagnosis is comorbid with a variety of somatic conditions with patients

who experience mental health problems as a direct consequence of the disease and
its treatment, as a consequence of the chronicity and debilitation associated with the
diagnosis, and as an exacerbation of preexisting psychiatric disorder. Patients with
psychiatric disorders participate less in their care, are less compliant with treatment,
have longer inpatient hospitalizations with more complications, and as a conse-
quence of these issues have a higher rate of adverse medical outcomes with greater
expense. Individuals with mental illness also make poor lifestyle decisions that
increase the risk of physical illness [5]. For instance, those with serious mental ill-
ness have higher prevalence of pulmonary disease in part because it is estimated that
44% of all cigarettes in the United States are smoked by those with serious psychi-
atric disorder [1]. Therefore, some of the care cost for other somatic conditions can
be directly attributed to psychiatric disorders.
Public Costs
Individuals with chronic psychiatric illness are more likely to be on public aid and
dependent upon public funds to support themselves than those individuals without
a psychiatric diagnosis. This includes cash assistance, food stamps, and public
housing. It is estimated that 22% of those who are incarcerated have a psychiatric
diagnosis and one third of the adult homeless population is suffering from a mental
health problem [1]. A psychiatric disorder diagnosis impacts educational attainment
early and later in life and often requires special education placement. Both factors
effect economic productivity [6].
Family Costs
A significant hidden cost of psychiatric disorders are the financial burdens family
members shoulder for their loved ones. In additional to paying for housing, food,
insurance, medical expenses, and transportation, family members of individuals
with chronic psychiatric disorders are less likely to experience career advancement
and wage increases [1]. The demands of caring for a chronically ill family member
require time away from work leading to lower productivity and lower wages.
The Impact of Psychiatric Illness
Comorbid Psychiatric and Physical Illness
The comorbidity between psychiatric disorder and physical illness creates addi-
tional costs for both the patient and the healthcare system. Major depressive disor-
der effects a variety of physical conditions including arthritis, asthma, cancer,
cardiovascular disease, diabetes, hypertension, chronic respiratory disorders, and
chronic pain conditions. These associations are noted both in the United States and
throughout the world. Major depressive disorder contributes to the prevalence of
these physical diagnoses and is a factor in the onset of coronary artery disease,
stroke, diabetes, myocardial infarction, and certain types of cancer. The poor health
decisions that frequently accompany major depression including smoking, alcohol
consumption, obesity, and poor compliance with medical recommendations predict
these illnesses. In addition, there is a possible association between depression and
hypothalamic pituitary adrenal hyperactivity, and impaired immune function that
may also affect susceptibility to illness [7, 8].
Major depressive disorder (MDD) influences the severity and prognosis of a
variety of physical illnesses. A study examined the impact of coexisting major
depression on health resource utilization, lost productivity, and the level of disabil-
ity in seven chronic medical conditions: diabetes, hypertension, coronary artery
disease, congestive heart failure, cerebrovascular accidents, chronic obstructive
pulmonary disease, and end-stage renal disease. These disorders present with a
high prevalence and a high public health and financial burden. The study classified
patients based on the presence and absence of a physical illnesses and the total
number of conditions per case. In addition, patients were identified as suffering
from a chronic disorder, a chronic disorder with major depression, or not experi-
encing a chronic illness. Results showed that patients who had both a major medi-
cal disorder and a comorbid diagnosis of major depression are more likely to have
ambulatory and emergency room visits, spend more days in bed due to illness, and
lose more workdays with a greater level of functional disability than those patients
without major depression. The study also demonstrated an incremental process
whereby patients became progressively more affected by the physical illness with
the presence of major depression [9].
Major depression can also be persistent and unresponsive to treatment.
Patients with treatment-resistant depression frequently suffer from comorbid
medical conditions including joint, limb, and back pain, hypertension, dyslipid-
emia, and chronic fatigue [10–12]. They are more likely to visit medical facilities
within the past year generating annual healthcare costs per patient that are higher
than for those patients with treatment-responsive depression [13]. The difference
in cost between these two populations is as high as $6000 per year, and when
compared to the general population, treatment-resistant patients increase costs
by over $10,000 per year. These trends are accompanied by a loss in productivity
per patient per year of over $4000 when comparing those with treatment-resistant
depression to those patients who are responsive. Treatment-resistant patients
have higher levels of absenteeism, lower levels of productivity, and a higher

degree of general disability [14].
A diagnosis of generalized anxiety disorder (GAD) is accompanied by signifi-
cantly higher median medical care cost when comparing individuals with and with-
out GAD symptoms. There is substantial evidence indicating that these patients
over utilize healthcare resources, and when anxiety is accompanied by comorbid
depression and recurrent pain disorders, medical costs increase significantly
[15, 16]. Between 11% and 23% of patients with GAD comorbid with major depres-
sion engage in suicidal behavior at an average of one to one and a half attempts per
patient [17, 18].
Patients experiencing chronic physical illnesses are at greater risk for mood
disorders as a direct consequence of the physiology of the medical disorder and its
treatment, the life adjustments necessary due to the impact of the disease, and the
possible exacerbation of preexisting psychiatric disorders in the face of pain and
disability. Approximately 15% of patients with stable heart disease have major
depressive disorder, a rate that is higher than in the general population and among
patients in a typical primary care practice. Patients with more serious cardiac con-
ditions, including acute coronary syndrome, myocardial infarction, heart failure,
and postoperative recovery, demonstrate a 15–20% rate of major depression.
Depression may have a role in the etiology of heart disease. A meta-analysis of
cardiac patients noted that depressive symptoms were associated with a 60%
increased risk of developing coronary artery disease when compared to patients
who had no evidence of coronary disease [19, 20]. It is also important to note that
MDD is related to higher rates of major cardiac events independent of associated
demographic factors [21, 22]. Anxiety disorders also increase relative cardiac risk,
and in fact studies show that among patients with no history of heart disease, the
presence of anxiety disorders led to 26% increased risk of coronary artery disease
[23]. Diabetics have a 60% higher rate of major depression, have a 123% higher
rate of GAD, and are more likely to experience symptoms of schizophrenia and
bipolar disorder than individuals without diabetes [24, 25]. Comorbid depression
is associated with poor glycemic control, poor dietary and medical compliance,
decreased quality of life, and increased healthcare cost [26]. Similar outcomes are
evident with other comorbid psychiatric disorders. The costs for the care of dia-
betic patients with comorbid depression remain considerably higher after adjust-
ment for age, sex, race, insurance coverage, and the presence of additional chronic
medical illnesses [25–27].
Patients suffering from medically unexplained symptoms have a variety of phys-
ical complaints that are not adequately explained by organic disease. These patients
often present with syndromes that include irritable bowel disease, fibromyalgia,
noncardiac chest pain, and inattention-related headaches. Patients with medically
unexplained physical symptoms are high utilizers of medical services and are seen
both in primary care and in specialty care practices. The greatest costs incurred by
these patients are during visits to specialty care, with a tendency to see multiple
specialists for the same problem. When the patients visit subspecialists, they are
accustomed to negative results and are, therefore, unlikely to be satisfied by simply
reordering tests. This pattern leads physicians to order a progression of even more
invasive and expensive procedures. Eventually, patients are referred for the identifi-
cation and treatment of emotional and behavioral problems that are unrelated to any
organic disease. The most appropriate and cost-effective way to care for these
patients is through an enhanced, multidisciplinary assessment that addresses the
possibility of somatoform symptoms with comorbid depression and anxiety diagno-
ses. A study by Burton and colleagues [28] examined three groups of patients: those
who were repeatedly referred with medically unexplained physical symptoms, those
who were infrequently referred for specialty care, and individuals who were referred
at least three times to specialty care for a medically explained diagnosis. The medi-
cally explained population is the most expensive to treat. However, the cost of medi-
cally unexplained disorders is almost equivalent to that group, indicating high levels
of disability and recidivism [28]. Functional gastrointestinal disorders, for example,
are diagnosed in approximately 10–20% of the general population in Western coun-
tries [29, 30]. Irritable bowel syndrome is the most common functional gastrointes-
tinal disorder, making up 12% of patients seen in primary care practice, and is also
the largest single group of patients treated in a gastroenterology practice [31]. Many
of these patients present with psychosocial problems, and the clinicians who care
for them are frequently ill-prepared to manage the complex nature of these cases.
Functional abdominal disorders decrease quality of life in a manner that is more
severe than other chronic illnesses, including diabetes, and increases both direct and
indirect healthcare costs. In a study that examined the illness burden of gastrointes-
tinal diseases, inflammatory bowel disease was second only to esophageal reflux in
its prevalence and led to a direct healthcare cost of 1.6 billion dollars and an indirect
cost of $19.2 billion per year [32]. Studies that examined comorbidity with func-
tional gastrointestinal diseases found high rates of anxiety disorders, mood disor-
ders, and somatoform disorders, particularly recurrent pain [33, 34]. The treatment
approach to these patients is based on a biopsychosocial model incorporating medi-
cal interventions that address physical symptoms with remedies that improve psy-
chosocial functioning, including psychotherapy, behavioral plans, and the use of
antidepressant medications.
The Financial Cost of Psychiatric Disorder
Patients with psychiatric disorder present with costs that stress the individual and
test community resources. Depression, for example, is a chronic disease, requiring
constant treatment for recurrent symptoms that produce high levels of disability,
higher rates of absenteeism, and early retirement. Efforts at reducing the cost of
depression focus on decreasing the number and length of inpatient stays because
hospitalizations account for a large percentage of the expenses. The severity of ill-
ness drives up costs by increasing the admission rates, emphasizing the importance
of accurate diagnosis, and prompting treatment in order to prevent a progression of
the disorder. A concomitant increase in the number of outpatient visits can occur
with more aggressive outpatient care, but the cost of these visits is much less than
the inpatient monies saved [35]. Older, female populations, residing in urban areas,
are considered more vulnerable to depression and are more likely to lose workdays
and retire early when affected by a mood disorder [36]. Fifty percent of all patients
who suffer from major depression do not achieve symptom remission and are clas-
sified as treatment resistant. Clinically, these patients do not respond to antidepres-
sant therapy after one or more adequate trials and experience symptoms for at least
6 weeks even on appropriate doses of the medications. Treatment-resistant depres-
sion increases medical and mental health costs, affects the patient’s quality of life,
requires the provision of additional medical resources, and limits participation in
the labor force. The differences in cost, between those patients who respond to
treatment compared to those who do not, are significant. Patients with treatment-
resistant depression have annual expenses that are nearly $5500 higher than
patients with treatment-responsive depression [37, 38]. The suicidal burden of
recurrent MDD in the United States is approximately $200 billion per year. The
total financial burden of treatment-resistant depression in the United States reaches
$64 billion per year [10].
In an assessment of the relative impact of mental illness on role functioning,
MDD and bipolar disorder had the highest level of impaired skills in both developed
and developing countries, when compared to physical disorders including cancer,
diabetes, and cardiovascular disease [39]. A World Health Organization (WHO) sur-
vey of nearly 250,000 respondents across 60 countries, with a broad range of social
demographic subgroups, demonstrated a larger impact for MDD on perceived health
than angina, arthritis, asthma, and diabetes [40]. An additional WHO World Mental
Health Survey compared 18 physical disorders including cancer, cardiovascular dis-
ease, and diabetes, with bipolar disorder, panic disorder, post-traumatic stress disor-
der, and major depression. MDD was among the three diseases with a highest
decrement in perceived health [41].
Revicki and colleagues examined the cost of GAD symptoms on society and
attempted to account for the fact that anxiety disorders are frequently comorbid and
it is difficult to clearly distinguish one from another. Anxiety patients also have high
rates of psychiatric comorbidity, with accompanying diagnoses of MDD, dysthy-
mia, bipolar disorder, and substance abuse disorder. The presence of additional psy-
chiatric diagnoses causes greater impairment in health-related quality of life and
makes these patients more difficult to treat [42]. In one study, an estimated 92.1%
of patients with a DSM-IV diagnosis of GAD had another comorbid lifetime psy-
chiatric diagnosis [43] and experience higher levels of disability when the GAD was
comorbid with a MDD. The level of chronic impairment can be more debilitating
than a number of chronic medical diseases including end stage renal disease and
cardiovascular disease [44]. GAD patients report a worse health-related quality of
life than individuals who suffer from acute myocardial infarction [45]. The majority
of these patients are treated in the primary care setting and often go undiagnosed
and undertreated. In a study by Marciniak and colleagues, a sample of insured
employer-based individuals demonstrated a mean total medical cost for individuals
diagnosed with any anxiety disorder in the United States to be approximately $6500,
with an additional cost of $2100 for patients with GAD, $1600 for panic disorder,
and nearly $4000 for post-traumatic stress disorder [46]. In primary care practices,
GAD increased median annual medical care costs per patient from $1450 to nearly
$2400 per year. The highest costs were in patients with generalized anxiety disorder
accompanied by recurrent pain. These patients over utilized medical services and
were more than 1.6 times more likely to see a primary care physician multiple times
in a single calendar year than patients without either GAD or MDD. An additional
troubling aspect in the care of these patients was that less than 25% received appro-
priate psychiatric treatment. Patients with GAD tend to struggle in areas of general
health, physical health, recurrent pain, and overall level of functioning [47]. These
disorders are twice as common in women as in men, with a lifetime prevalence for
women of 6.6% versus 3.6% in men [48].
Schizophrenics have a higher prevalence of a number of chronic diseases includ-
ing HIV infection, hepatitis, osteoporosis, sexual dysfunction, obstetric complica-
tions, cardiovascular diseases, obesity, diabetes, dental problems, and polydipsia
than the general population [49]. Patients with schizophrenia also experience a mor-
tality rate that is two to three times higher than the general population [50].
Antipsychotic medication presents a mortality risk due to cardiovascular disease,
but these drugs reduce overall mortality when compared to patients who receive no
treatment because of the multiple health risks that accompany schizophrenia. It is
also interesting that the mortality risk among offspring of patients with psychotic
disorders is also higher than the general population [51].
Family Burden of Psychiatric Disorder
Individuals with early-onset psychiatric disorders have both a lower probability of

ever marrying and a greater risk of marrying before age 18. The associations are the
same for men and women, and there are indications that the presence of MDD in
either partner is one of the most significant determining factors in the lack of marital
success. These relationships are bidirectional, meaning that marital discord can pre-
dict depression and depression can have a significant impact on the stability of mari-
tal relationships. Mood disorders also have an impact on how well individuals
function in their marriage. Perpetration and victimization by physical abuse in mari-
tal relationships are associated with depression and indicate that marital violence
may be a consequence of psychiatric disorders in one or both partners [52, 53].
These outcomes disappear, however, after controls are introduced for disruptive
behavior disorders and substance abuse [54]. Nevertheless, a relationship exists
between a premarital history of mental disorders and divorce for both husbands and
wives, and these associations apply across multiple psychiatric diagnoses [55].
Studies compared the impact of both physical and mental disorders on “days
out of role” in an effort to measure relative burden on employment and interper-
sonal relationships. MDD is associated with the highest number of days out of
role of any physical or mental disorder due to its prevalence and high individual
association. In a WHO World Mental Health Survey of almost 63,000 respon-
dents across 24 countries, MDD had the fourth highest population attributed risk
proportion exceeded only by recurrent headaches/migraines, chronic pain, and

cardiovascular disease [56].
Almost half of all patients with schizophrenia live with their parents as adults or
have decided to move back in with their parents because of the need for additional
support [57]. Responsibility for the care of these patients frequently shifts to the
spouse, partner, or sibling because these patients require constant attention, mak-
ing a significant impact on the lives of their caregivers. Relatives or loved ones may
be required to reduce their working hours, particularly as patients become more
dependent [58].
MDD in pediatric patients predicts increased rates of teen pregnancy, as do other
early-onset psychiatric disorders associated with increased rates of impulsive sexual
activity, typically without the use of contraception. Maternal and paternal depres-
sion negatively impacts parental behaviors, leading to maladaptive interactions with
their children that affect regulation and emotional development. The result is the use
of inappropriate problem-solving techniques that are passed from one generation to
another [59]. The presence of an early-onset psychiatric disorder is related to early
termination of education. This tendency is more evident in disruptive behavior dis-
orders and bipolar disorders, but MDD is also associated with a 60%, elevated rate
of failure to complete secondary school when compared to similar populations in
developed countries [60–64].
The Cost of Incarceration
The rate of mental illness in the incarcerated population is three to six times the rate
in the general population. These are patients suffering from schizophrenia, bipolar
disorder, and MDDs, with a significant percentage not receiving any mental health-
care. Tiihonen and colleagues showed that schizophrenics were seven times more
likely to commit at least one violent crime when compared to patients who did not
have a mental illness [65]. Hodgkin noted that violent offenders with schizophrenia had
no signs of antisocial behavior before they were diagnosed [66]. Incarcerated indi-
viduals with chronic psychiatric conditions have high recidivism rates, estimated at
53% per year, a rate nearly double the 30% among parolees who do not have a
psychiatric disorder [67]. States are closing publicly funded psychiatric beds that
are available to individuals with chronic mental illness, including schizophrenia and
bipolar disorder, increasing the rates of incarceration. These are individuals prone to
agitation and have paranoia symptoms that are exacerbated by involvement in the
penal system. The homeless population frequently has contact with the legal system
rather than mental health or rehabilitative services. Rates of mental illness in the
homeless population range from 63% to 90%, a dramatic increase when compared
to a 15% rate in the general population. Studies show that over a 2-year period,
providing housing and community-based treatment decreases rates of arrest and
improves prognosis for homeless individuals [68]. Appropriate treatment also
avoids confrontation with law enforcement, something that occasionally leads to
injury for the homeless offender as well as for the police officer. Services that utilize
community paramedics to redirect homeless individuals with serious mental illness

to mental health services rather than hospital emergency departments have been
effective both clinically and economically [69].
Mental illness has been “criminalized” in part due to the lack of appropriate
services and poor compliance among those patients who have access to any form of
treatment. Robertson and colleagues used the monthly medication possession ratio
(MPR), the proportion of days in the month that the patient has supply of medica-
tions that were appropriate for the diagnosis, as a measure of treatment success. The
authors considered a ratio greater than or equal to 80% to be an indication of com-
pliance, adherence, and adequate care. Low MPR ratios within the first 90 days of
treatment were found to be indicators of increased risk of arrest and incarceration.
Individuals with higher post-hospitalization MPR had lower criminal justice costs
but higher treatment costs due to improved compliance with inpatient care, outpa-
tient services, case management, and psychotropic medications [70]. Swanson and
colleagues examined costs among individuals with criminal justice involvement
who had serious mental illness by reviewing the expenses of state agencies provid-
ing mental health, substance abuse, and criminal justice services over a 2-year
period from 2006 to 2007. Approximately one in four patients with either bipolar
disorder or schizophrenia was involved in the criminal justice system with costs that
were nearly double those patients who were not involved [71]. Individuals with seri-
ous mental illness have a pattern of relapse and recidivism that effect their ability to
have appropriate housing, employment, income, community time, as well as more
personal goals involving marriage and personal well-being.
Little information is available on the incidence of incarceration and use of social
services among individuals with depression and the burden on family members and
caregivers of these patients. They often have responsibility for the routine care of
these patients as well as the potential consequences of poor treatment adherence and
the absence of appropriate services. For example, adolescent patients with treatment-
resistant depression are more likely to attempt suicide when compared to adults, and
the rates of substance abuse disorders in this population are higher than either cur-
rent or lifetime rates in the adult population [72]. Families and caregivers struggle
with a healthcare system that can be unresponsive to the needs of mental health
patients. The detection and treatment of mental illness is affected by access for cer-
tain racial and ethnic groups, and the association between the availability of insur-
ance coverage and employment limits services for those who are jobless or
underemployed. These factors affect both access and quality of care [73, 74].
Summary
By understanding the extent and framework of these hidden costs, the unique bur-
den that psychiatric disorders place on our society can be fully appreciated. The
implication on productivity as demonstrated by reduced gross national/domestic
product coupled with the added public funds necessary to support patients in the
social and justice systems magnifies the total cost of psychiatric diagnosis [75].
Furthermore, the added cost associated with concomitant medical and psychiatric
disorders contributes to expenses within the entire healthcare system that may be
difficult to allocate, but all clearly drive the overall increases in healthcare costs.
When considering families of those with chronic psychiatric illness, the financial
and emotional toll is profound and not well understood. The hidden costs of psychi-
atric illness demonstrate the importance of effective treatment that includes
community-based services that not only address symptomatology but the broad
impact that these disorders have on families and communities.
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Nonadherence in Childhood Disorders:
Attention-Deficit/Hyperactivity Disorder 2
Joseph C. Blader
This chapter focuses on adherence to treatment for attention-deficit/hyperactivity

disorder (ADHD) with children and adolescents. It begins with a general orientation
to ADHD, including its course and treatment, and highlights how pharmacotherapy
for this disorder differs from others and how these differences affect adherence. We
then summarize research findings on treatment adherence and continuity for
ADHD. A review of the treatment, patient, and family characteristics that influence
treatment adherence follows. The concluding section addresses clinical practices
that may promote adherence and treatment continuity.
Overview of ADHD and Its Treatment
Description, Impact, and Course
To understand the consequences of suboptimal treatment for youth with ADHD, it

is important to recognize the disturbances in self-regulatory processes that it reflects.
A major feature of child development is the emergence of self-directed control
over behavior, thought, emotion, and social interactions. Self-control of these things
often involves suppressing a more “automatic” response with one that may be less
immediately satisfying and more effortful but fulfills adaptive goals or social expec-
tations. Deficits in age-appropriate controls therefore frequently appear as difficul-
ties with curtailing highly stimulating behavior in favor of engaging with less
stimulating situations (hyperactivity); with willfully directing cognitive focus and
effort to material that does not intrinsically capture one’s interest (inattention/
J. C. Blader (*)
Meadows Foundation & Semp Russ Professor of Child Psychiatry,
Departments of Psychiatry and Pediatrics, University of Texas Health Science
Center at San Antonio, San Antonio, TX, USA
e-mail: blader@uthscsa.edu

https://doi.org/10.1007/978-3-030-12665-0_2
18 J. C. Blader
distractibility); and with suppressing behavioral urges that lead to disadvantageous

consequences (impulsivity, low frustration tolerance). People vary in the rate and
ultimate level at which they acquire these functions. However, persistent and severe
deficiencies pose risks from harmful behaviors, threaten learning and skills devel-
opment, and disturb interpersonal relationships. These and other adverse outcomes
often affect long-term adaptation and quality of life, as well as increase the risk for
other psychopathology.
The idea that these difficulties, when severe and persistent, represent a psycho-
logical and medical disturbance took hold early in the twentieth century. It was
subsequently incorporated into psychiatric classification which evolved into today’s
diagnosis of attention-deficit/hyperactivity disorder. However, one effect of renam-
ing the disorder to emphasize attentional difficulties was that it began to convey a
less severe type of psychopathology – signaling a circumscribed problem with
information processing or a type of learning disability – than the more extensive
impairments in behavioral regulation that those affected experience [1]. Therefore,
one often hears that children with ADHD and significant behavioral disturbances
have “more than ‘just’ ADHD.”
This, probably inadvertent, image of downgraded severity occurred with DSM-
III’s [2]. Tools to study attentional processes meshed with DSM-III’s goal of foster-
ing a reliable, objective basis for psychiatric diagnoses. Hyperactive children show
abnormalities in sustained attention and information processing. DSM embraced
the notion, never confirmed, that attentional problems were the fundamental deficits
that led to other symptoms. The practical point in this context is that patients and
families at times struggle to reconcile the impairments they observe with the diag-
nosis’ name, which does not instill confidence in its applicability nor its treatment.
For instance, it perplexes them to say the child has attentional problems when he or
she can “pay greater attention to video games all day long,” until they learn that it is
effortful and sustained attention to less interesting things, that is, the symptom.
By current definition, symptoms of ADHD must be evident in childhood (before
age 12), a requirement that seeks partly to insulate it from confounding with other
disorders that have a later onset and might produce similar symptoms. Its preva-
lence in these age groups in the United States is approximately 4–7%. The causes of
ADHD remain unknown, but a strong genetic contribution to its etiology is by now
well-established [3]. Among nongenetic factors, maternal smoking and perinatal
problems may increase risk [4]. ADHD is generally thought of as a neurodevelop-
mental and congenital condition, rather than acquired, largely because its high and
early incidence is only rarely attributable to brain injuries, disease, or adverse
exposures.
Course and outcomes vary considerably among adults diagnosed with the disor-
der earlier in life, with estimates of syndrome persistence likely between 30% and
50% depending on methods [5]. However, when adults no longer fulfill diagnostic
criteria, it is unclear if this represents true “remission” or rather their attainment of
a vocational and social milieu is a better fit than the regimentation and confinement
during school years that tend to exacerbate ADHD symptoms.
2 Nonadherence in Childhood Disorders: Attention-Deficit/Hyperactivity Disorder 19
Treatment
Current guidelines for the management of ADHD for school-age children highlight
pharmacotherapy and psychosocial interventions. Among medications, the effect
sizes for stimulant medications are the largest [6, 7]. Most psychosocial treatments
with evidence of benefit are those that target associated problems, such as conduct
problems, academic productivity, and social skills, rather than the core symptoms of
hyperactivity, impulsivity, and inattention. The dominant viewpoint is that psycho-
social therapies are beneficial in tandem with appropriate pharmacotherapy at least
for most presentations with greater than mild severity [8, 9]. The use of medications
for preschoolers is a more unsettled issue; treatment often improves symptoms but
unease over the higher incidence of adverse effects and uncertainty about its impact
on development raises the threshold for prescribing to situations where the status
quo poses high risks or hardships (e.g., dangerous behavior toward a younger sib-
ling, expulsion from child care threatens parents’ livelihood, or behavior hinders
involvement in early remedial services).
Like many psychiatric disorders and treatments, there is no time-limited “course”
of ADHD pharmacotherapy that is known to alter the underlying disorder. The
maintenance of medication treatment effects seems to require sustained medication
use. In addition, the therapeutic effects of the medications in widest use, long-acting
preparations of stimulants and noradrenergic alpha-2 agonists, fade over the course
of a day. Adherence to pharmacotherapy therefore involves taking medication daily,
at least on days when alleviation of ADHD symptoms is deemed important. Because
methylphenidate and amphetamine-based ADHD medications are highly regulated
products, it is somewhat more cumbersome process for clinicians, families, and
pharmacies to prescribe, dispense, and obtain refills over extended periods.
Changing dosages or medications shortly after dispensing also often requires efforts
to address legal or pharmacy benefit limitations. The net effect is that the impact of
ADHD treatment is both highly sensitive to lapses in dosing and subject to barriers
relative to other prescription medicines.
On the other hand, ADHD pharmacotherapy has some features that might make
adherence more likely. A problem with maintaining many health behaviors is that
their purpose is to affect an outcome that is in the future; a major goal of adher-
ence promotion is to cultivate patients’ belief in a behavior-outcome relationship
that at present appears hypothetical [10]. In contrast, the tight and observable
linkage between ADHD symptoms and the effects of a medication regimen pro-
vides practically immediate feedback on the consequences of administering and
of withholding it. The potential for readily observed benefits of treatment to main-
tain adherence depends, of course, on achieving a good outcome in the first place.
Most medications for ADHD have a time course and dose-response relationships
that differ from other common psychiatric pharmacotherapies. The next section
identifies these characteristics and their implications for optimizing outcomes and
adherence.
20 J. C. Blader
Characteristics of Effective Pharmacotherapy for ADHD
If one advantage of common medications for ADHD is that they reveal the full
extent of their effects shortly after beginning treatment, it is essential to understand
that establishing a patient’s optimal regimen is essentially a trial-and-error effort.
The difference in efficacy between a given dose and its next increment, particularly
for stimulants, can be profound. Broadly speaking, higher doses are, on average,
both more efficacious and incur more adverse effects; children whose symptoms are
predominantly inattention, rather than hyperactivity and impulsivity, may benefit
from lower doses at which they reach an efficacy ceiling [11, 12]. Nevertheless, the
exact dosage at which one experiences adequate symptom reduction is idiosyncratic
and not well predicted at the individual level from readily available information like
age, weight, severity, or comorbidity.
Because optimizing stimulant medication is largely a dose-finding effort [13], it
differs from other medical treatments with which patients and practitioners have
experience. Most often, one starts a prescribed treatment and expects it to be help-
ful. In contrast, the initial dose of a stimulant medication has a low probability of
being effective but starting with low doses is preferred practice to ensure
tolerability.
The implication for adherence is that patients need an orientation to dose titration
process to calibrate their expectations and avoid feelings of discouragement or futil-
ity early on. Providing a framework at the beginning for how treatment will unfold
may help to preclude some beliefs that patients and families often have that can
hinder appropriate dose escalation:
1. Higher doses imply greater severity (“I want my child to be on the lowest dose
because he’s not all that bad”).
2. Any dose increase carries vastly higher risk (“A higher dose will harm my
child”). They may gauge the strength of a regimen by what they hear of other
children’s treatment and develop inaccurate notions of dose strength.
3. Parents ambivalent about medication may feel that in initiating treatment they, in
a sense, capitulated to what others recommended. Now, with the prospect of rais-
ing dose, they may allay that discomfort by taking a stand against it.
The key points to convey at the outset are that (a) we do not have particularly
high hopes for the initial treatment step or steps; (b) dose escalation is an expected
aspect of effective treatment with these medications; (c) severity and therapeutic
dose are not necessarily correlated; and (d) the point to starting low is to make sure
the medicine agrees with him or her before exposure to higher doses.
Their short duration of action and other pharmacokinetic properties make stimu-
lant medications amenable to starting and stopping with no loss of efficacy on days
they are administered nor withdrawal-associated health risks. It is common for
patients and clinicians to withhold medication on nonschool days or during other
times when symptoms are thought not to be impairing; estimates of this practice are
around 30–40% of patients [14, 15]. Other reasons for considering periodic
interruptions in treatment are to offset risks of growth suppression and to assess

continued efficacy [16]. For many children, though, the extent of behavioral distur-
bance or impaired capacity to participate in nonschool activities warrants continua-
tion of treatment. The prevailing view is that planned or structured suspensions of
treatment, so-called drug holidays, can be an appropriate option but should be
adopted with consideration of individual need and circumstance rather than blanket
policy. Increasing use of co-therapy with other medications that do have risks asso-
ciate with abrupt discontinuation after prolonged treatment (noradrenergic alpha-2
agonists, atomoxetine, bupropion) requires that patients understand which com-
pounds are unsuited for drug holidays.
Widespread intentional discontinuity of stimulant treatment poses a complica-
tion for research on adherence because in many data sources differentiating it from
interruptions in treatment that are not “sanctioned” is difficult. Since few clinicians
write monthly prescriptions to dispense a quantity that covers only school days,
families can end up with a medication surplus that enables a period of treatment
without filling a new prescription. Analyses of claims databases risk counting such
a period as nonadherence.
Finally, as children develop, ADHD regimens may need adjustments to remain
efficacious or to reduce risks. Increased body size often entails a higher dose to keep
the same drug concentration. As time goes on, patients with ADHD have a higher
probability than their peers for the onset or exacerbation of comorbid disorders that
require treatment. These developments risk premature and disadvantageous treat-
ment when the medication is misperceived either to have become useless or to be
the cause of an upsurge of problems. Of course, these can in fact be the case, but the
more common risk is that unreasonably ending ADHD treatment altogether is detri-
mental to functioning [17–19]. These considerations underscore the importance of
maintaining collaborative long-term relationships that encourage families to raise
these concerns promptly.
Estimates of Treatment Adherence and Nonadherence
Estimates of treatment adherence depend on the method of capturing data and on

investigators’ definitions of adherence. The two main research approaches involve
data acquisition either prospectively from individual patients or retrospectively
from large administrative databases, such as pharmacy benefit claims, to infer
patient medication use [20].
Information from patients has included their self-reported medication use, their
health providers’ assessment of adherence, pill counts at regular intervals, and the fre-
quency and times of pill bottle opening that an electronic device embedded in the cap
measures (“medication event management system,” or MEMS). As one might expect,
self-reports of ADHD medication use provide the highest adherence estimates and
MEMS the lowest [20, 21]. A review of studies based on self-report medication use
concludes that “36%-68% of children consistently use ADHD medications once initi-
ated” and that consistency declines over time [21]. Another review reached similar
22 J. C. Blader
conclusions [20]. Using different methods to gauge adherence from the same sample,
a South Korean cohort, the proportions of families meeting criterion for adherence
were 82% based on parent report, 87% for pill counts, and 54% for MEMS cap mea-
surement. Pappadopulos compared parental report with salivary assays for participants
in a clinical study, who were probably better disposed than a general clinic sample to
implement treatment as prescribed; parent report indicated 97% adherence, substan-
tially larger than the 75% estimate that biological measure provided [22].
Analyses of administrative data often evaluate the ratio of days prescriptions
should cover if used as directed from the date of its dispensing to the number of days
until it is dispensed again. This value represents the medication (or drug) possession
ratio (MPR/DPR), which, when adjusted for overlap caused by early refills, yields
the “percentage of days covered” (PDC) [23]. MPRs of at least 0.8 are the cut-point
in many analyses for dichotomizing medication adherence and nonadherence.
Reported adherence rates from Medicaid claims in Texas were 13–22%
(extended-release products showing higher rates) at 6 months [24]. Another analysis
of Medicaid beneficiaries with ADHD residing in urban areas had a mean MPR of
0.31 [25]. Analysis of a managed care database reported median MPRs of 63% for
6–12-year-olds and 51% for 13–17-year-olds [26]. Clearly, only a minority from
these two studies would fulfill the 80% adherence threshold. An analysis of phar-
macy claims data in Quebec indicated the highest adherence for patients younger
than age 10 prescribed extended-release stimulant preparations (75%) and the low-
est for 15–19-year-olds treated with immediate-release preparations (25%) [27].
Some studies focused on persistence of treatment, the time from initiating treat-
ment until there is a gap long enough usually 6 months or so, to suggest that the
index treatment episode was, for all practical purposes, discontinued. Findings sug-
gest that treatment lacks the continuity that a chronic condition like ADHD war-
rants, with the steepest incidence of discontinuations occurring between 1 and
3 years after starting treatment [17, 28, 29]. Looking at briefer intervals between
medication dispensing claims (1–3 months) indicates that continuity declines with
shorter periods; in the 12 months after initiating treatment, about 52% of patients
did not have a break in medication coverage lasting 3 months or less [30].
The method of measuring the number of prescribed doses taken affects adherence
estimates. For instance, Yang et al. reported adherence rates determined by pill counts,
parent report, MEMS, and clinician ratings; these sources produced adherence rates of
87.2%, 82.1%, 53.8%, and 68.3%, respectively. Therefore, using MEMS as the refer-
ence standard, 46.2% of the children did not meet criteria for adherence.
Correlates of Treatment Adherence
Treatment-Related Factors
edications’ Duration of Action

M
The therapeutic effects of a single administration of methylphenidate or an
amphetamine-based stimulant medication at standard doses last several hours at
most. Children needing symptom relief over the school day would require a morn-
ing dose before leaving for school and another given at school around lunchtime.
Administering medications at school faces several logistical hurdles that involve
parents’ supplying school staff with the medicine and the requisite approvals, the
school providing secure storage, and ensuring the child can get to the dispensing
location (e.g., nurse’s office). The process also stands to interfere with the child’s
routine and evokes stigmatization and self-consciousness.
A significant improvement in ADHD pharmacotherapy was the development of
long-acting stimulant preparations that both bypass these hurdles and overcame the
limitations of early attempts to produce effective long-acting medications. Earlier
products used continuous-release mechanisms that often proved less effective than
repeat dosing. Stimulants, like some other psychoactive drugs, require phasic or
pulsatile release to avoid a dampening of efficacy that occurs when the blood con-
centration curve is flat for long periods (an effect called tachyphylaxis) [31].
Preparations that overcome this problem are taken once daily, after which medica-
tion releases in distinct “volleys” about 3–4 h apart. The first such product
(Concerta™) became available in the United States in 2000, and there are now
diverse technologies to achieve extended coverage. It is worthwhile to review this
information for families so they understand that release mechanism is the main
distinguishing feature of products within the methylphenidate and amphetamine
classes.
Most of the studies reviewed in the previous section on adherence rates were
conducted when original immediate-release preparations and newer extended-
release preparations were both in wide use. Virtually every study that examined the
association between the medication’s delivery system and adherence or duration of
treatment found that the use of long-acting products was more advantageous [24,
26–28, 32–35]. Studies of adult patients show the same pattern [36, 37].
Atomoxetine is a nonstimulant medication that achieves a steady-state concen-
tration with once-daily administration and should therefore have a longer duration
of action at therapeutic doses. Notwithstanding these advantages, treatment adher-
ence and persistence are lower among atomoxetine-treated patients compared with
stimulants [29]. Its overall smaller effect size and tolerability issues [38] likely con-
tribute to this result, consistent with greater tendency for patients to switch from
atomoxetine to stimulant medications than the reverse [39].
are Delivery and Components

C
The frequency and quality of patients’ interactions with prescribers and other
behavioral health clinicians affects adherence and outcomes. Early phases of treat-
ment seem especially important. Brinkman and colleagues found that the follow-up
soon after initial prescribing was related to greater continuity of treatment [40].
They also found that early dose titration correlated with more sustained treatment,
conceivably because greater symptom improvement follows.
When the clinical setting’s treatment protocol included obtaining specific written
consent before starting pharmacotherapy, adherence was higher than when treat-
ment began without it [41]. It is unclear why this would occur, but is reasonable to
24 J. C. Blader
speculate that for some parents the practice galvanizes commitment, highlights the
significance of the intervention, or leads them to suppose that there is greater exter-
nal oversight of medication.
Other components of the health service context may affect treatment engagement
and adherence, but data is sparse. It is unclear whether the practitioner specialty
(psychiatrist, pediatrician, etc.) has a distinct influence on adherence, given the
number confounding factors involved. Although psychosocial treatments are rec-
ommended for ADHD, and families often indicate they desire them, only a minority
of patients can access them, and their impact on medication adherence is
uncertain.
The process of obtaining refills for controlled substances like stimulants can be
a formidable barrier to maintaining consistent treatment. As secure electronic pre-
scribing becomes more widely adopted, obtaining refills may be less cumbersome
in many states.
Pharmacotherapy Outcomes
In the short term, the effectiveness of treatment reinforces its continuation, which
bolsters the importance of prompt establishment of an effective and well-tolerated
regimen [42]. By the same token, adverse effects discourage continuation [43].
Stimulant medications rarely have adverse effects that the changes in dose, product,
time of administration, or other adjustments do not alleviate. It is essential that
patients and families understand the overall strategy for determining optimal treat-
ment. There is a strong case for using rating scales that quantify both therapeutic
response and adverse effects at each visit; even good and systematic narrative notes
make comparing treatments cumbersome.
Discontinuation of treatment may result from the perception that treatment has
been ineffective or treatment has resolved the child’s difficulties so that it is no lon-
ger needed [44, 45]. Families often intentionally alter dosing and days of adminis-
tration without consulting prescribers. The prevailing professional view is that
ADHD’s chronic nature should lead patients to experience relapse when they dis-
continue effective treatment, and fact adherence is both cost-effective and better for
outcomes [46]. But at the individual level, pharmacotherapy needs can wax and
wane with the environmental changes that accompany each year, such as teacher(s),
peers, academic demands, and so on. As noted earlier, this is obviously a problem
for medicines whose erratic administration or abrupt discontinuation has health
risks, but these are rarely concerns for stimulant medications. Clinicians can man-
age these family-initiated alterations to treatment by encouraging discussion and
agreeing on a process to evaluate if the outcome is beneficial or not.
Patient-Related Factors
ge
A
Age is perhaps the patient characteristic associated most consistently with ADHD
treatment adherence. Adherence and duration of treatment becomes spottier among
adolescents than children. Longitudinally, a high proportion of individuals receiv-

ing pharmacotherapy as children discontinue as adolescents [17]. Patients first initi-
ating treatment as adolescents also show less adherence relative to preadolescents.
Clinical Characteristics
Greater severity of ADHD symptoms may dispose to more prolonged adherence
[47, 48]. Patients receiving co-therapy with stimulants plus another psychotropic
medication, a plausible proxy for severity or complexity, may be more consistent
with treatment [25],
While these findings would suggest the conduct disturbances that often accom-
pany might increase treatment adherence, there are instances where patients’ defi-
ance may deter treatment continuation. Conflict over taking medication is a common
reason for discontinuation or missed doses [49, 50]. The availability of liquid and
transdermal stimulant preparations may offer alternatives that achieve therapeutic
impact with less upset to the child.
Family and Caregiver Factors
Caregiver Characteristics
Ahmed’s review [20] identified two factors that disposed to greater treatment adher-
ence, parental separation and out-of-home residential placement, including foster
care. The latter is unsurprising since foster parents assume that role recognizing
their responsibility meeting the child’s medical needs. The effect of parental separa-
tion might imply greater adherence when there may be higher surveillance of one’s
child care activities [51]. On the other hand, practitioners often observe inconsistent
administration when separated parents disagree about medication.
atient and Family Perspectives on ADHD and Treatment

P
Long-term adherence to medical treatments is frequently erratic even when peo-
ple affirm their commitment and belief that the intervention is beneficial [52,
53]. Ambivalence or skepticism about a treatment’s desirability stands to hinder
treatment-supportive behavior even further. Patient and family attitudes toward
ADHD pharmacotherapy often include these uncertainties, which guilt and anx-
ieties frequently intensify. Few prescribed pediatric medical interventions evoke
such high internal conflict. Parents express distrust of the diagnostic process
when it leads to what seems a hasty conclusion and encouragement to start
medication [15, 54]. In a sense, it is relatively easy for a competent professional
to accurately diagnose or to rule out ADHD. It is more challenging to provide
families a cogent and informative justification to instill confidence that pharma-
cotherapy is worth undertaking.
The settings in ADHD symptoms cause difficulties, and the severity of their
impact affects families’ attitudes toward medication. Findings from qualitative
and survey studies [15, 44, 45, 54, 55] suggest that parents’ self-doubt the need
for ADHD pharmacotherapy out of concern that they not medicate a child simply
26 J. C. Blader
because they find his or her conduct difficult to manage; put another way, they are
wary that they would stand accused of giving their child drugs for their own con-
venience. However, experiences outside of home often galvanize parents’ inten-
tions to begin treatment, spurred by their child’s underachievement or problematic
behaviors in school, and, poignantly, when parents see them experience the pain
of peer rejection. Even in these more dire circumstances, parents may resent that
their child is labelled with an abnormality when they perceive unfairness in how
their child is treated in school and elsewhere. And, in fact, they are not always
wrong: children with ADHD are prone to scapegoating, teasing and other provo-
cations, and exaggeration of their role in classroom mischief. Comorbid learning
disorders can lead to scholastic problems that are attributed exclusively to ADHD
or character flaws.
Nevertheless, confirming a valid diagnosis of ADHD can coexist with acknowl-
edging the stresses and adversities that a child’s environment poses. It is also rea-
sonable to suggest that neuropsychological testing will yield more accurate
specification of a learning disorder after ADHD symptoms have responded to treat-
ment, so they do not confound the evaluation. The point for clinicians is that they
have an important role in helping patients and families consider the right treatment
for the right reasons and to commit to implementing the chosen course to maximize
its chances of success.
Adolescents’ attitudes toward continued treatment often reflect similar uncer-
tainties. Many recognize how it contributes to concentration, feeling more “in
charge” of themselves and less prone to impulsive, perhaps embarrassing, behav-
iors. Data is limited, but it seems reasonable that if they find others supportive and
appreciative of their assets and efforts, rather than blaming and controlling amidst
frequent conflict, that motivation to stay the course would improve adherence. By
the same token, those who come to associate treatment with the belief that they are
troublesome to others and perceived as different would be more likely to disengage
from it. It is important to link outcomes of treatment to the patient’s own goals and
not a matter of parents or others being right or wrong. Enabling adolescent to have
a more active role in determining treatment (choosing the specific agent, comparing
doses for benefit and adverse effect, etc.) contributes to disentangling treatment
from other power struggles families they often experience.
uture Directions: Adherence with Interventions Other Than

F
Pharmacotherapy
Adherence with non-medication interventions is less well studied, but potentially

important. ADHD can have pervasive impacts that pharmacotherapy alone may not
alleviate, though it may enable other forms of assistance to gain traction, notably
those that target parent-child relationships, peer interactions, self-esteem, and orga-
nizational skills, as well as those that aim to reduce the incidence of common
comorbidities such as depression and substance abuse.
A fundamental challenge, however, is defining adherence for these interventions.

At a basic level, it is common to examine number of sessions attended over a given
period. At another level, it may be more appropriate to gauge adherence by one’s
application or practice of behaviors office visits addressed. For instance, it is prob-
ably more important for parents to implement strategies to promote better controlled
behavior and improve their relationship with a child than simply attending visits or
groups.
The office visit model of psychosocial treatments may soon be superseded or
complemented by greater use of Internet-based tools. There are already smartphone
applications to promote children’s engagement in completing household and aca-
demic tasks they are prone to resist, and children with ADHD can find them appeal-
ing. These approaches enable fairly automatic data capture about their use, which
would be an asset to studies of treatment adherence and impact.
I mproving Outcomes by Diminishing Barriers to Adherence

and Continuity with Effective Treatment
This review suggests some ways clinicians can improve the likelihood that treat-
ment for ADHD will yield benefits to patients.
First and foremost is psychoeducation that includes a clear overview of the phar-
macotherapy process. It should emphasize that establishing the best regimen is a
process that may involve trials of several doses and medications. Alleviating con-
cerns about adverse effects is also important.
The simpler the treatment the more likely patients are to implement it accurately
and consistently. The wide array of once-daily medications that differ in duration of
action offers the prospect of greatly improved adherence.
Prompt follow-up after starting treatment accompanied by titration as needed
improves adherence. This can be challenging in some high-volume settings where
scheduling an appointment in the next 30 days can be problematic, let alone within
a week or two. The advent of e-prescribing may facilitate a process whereby tele-
phone updates from the family can allow the prescriber to proceed with dose adjust-
ments before the next office visit.
As youth transition into adolescents, shifting the emphasis from parental report
about behavior to more time devoted to the patient’s own concerns may promote
sustained engagement and adherence with treatment.
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Coming of Age and Refusing to Eat:
Overcoming Treatment Nonadherence 3
for Adolescents with Anorexia Nervosa
Introduction
Anorexia nervosa (AN), which generally first presents during early adolescence, is
widely recognized as one of the most difficult to treat psychiatric disorders. This is
partially due to the fact that some of the core symptoms of the illness are viewed
by the individual as favorable and positive. This ego-syntonic aspect of AN con-
tributes to denial of the diagnosis and refusal of treatment recommendations, par-
ticularly those aimed at weight restoration and normalized eating. Adolescents are
usually pleased with their capacity of being able to control what they eat and are
fearful of their recovery. What this means is that often the individual with AN does
not see the illness as something which needs to be treated and overcome. In fact,
frequently, the individual sees the ability to restrict food intake and subsequent
attainment of an emaciated body as a desirable goal which is often not only recog-
nized as such by others but also receives compliments and admirations from others.
The social and cultural value of extreme thinness for both males and females is
rewarded and applauded by the wider society. Needless to say, this leads to particu-
larly energetic drives by the individual to reject and/or refuse to accept the diagno-
sis and to adhere to the treatment plan. In fact, the ego-syntonic nature of AN often
leads to complete denial of illness and subsequent rejection of all interventions.
For example, the dropout rate from voluntary inpatient treatment programs is very
high, at approximately 51% [1].
V. Fornari (*) · I. Dancyger

Donald and Barbara Zucker School of Medicine at Hofstra/Northwell,
Hempstead, NY, USA
Division of Child and Adolescent Psychiatry, Department of Psychiatry,
North Shore University Hospital and The Long Island Jewish Medical Center
(Including The Zucker Hillside Hospital and Cohen Children’s Medical Center),
Glen Oaks, NY, USA
e-mail: vfornari@northwell.edu; idancyge@northwell.edu

https://doi.org/10.1007/978-3-030-12665-0_3
32 V. Fornari and I. Dancyger
How Do Patients Comply with Treatment?
Treatment refusal and nonadherence to treatment recommendations by adolescents

with AN will be explored in this chapter. We will provide a brief and selective
review of the research which attempts to clarify the factors contributing to difficul-
ties in engaging the patient, challenges in attempting to form a therapeutic alliance,
and failures with compliance and adherence to following treatment protocols and
goals. In addition, two clinical vignettes will be presented to describe a range of
clinical factors which impact the acceptance and compliance to treatments by ado-
lescents with AN and their families.
The tasks of adolescence are often in conflict with the adults in the adolescent’s
life. The management of treatment refusal and nonadherence is one of the challeng-
ing obstacles in working with this age group. The development of clear behavior
management protocols, over the past 50 years, addresses the intense resistance to
acceptance and recovery. These behavioral plans take into account this aspect of
adolescent development. These tasks include the overarching goals of individua-
tion, separation, and autonomy. Individuation refers to adolescents’ focus on the
development of their own unique personal sense of identity, separate from their
parents’ likes and dislikes, values, and personality traits. Separation refers to the
journey of adolescents breaking away from their parents’ domination and control
and moving toward creating stronger connections with peers and learning to think
for themselves with less adult influence and also the beginning of intimacy and
sexuality development. During this phase, impulsivity and poor choices often are in
conflict with issues of control from parents, fearful about their children’s behavioral
decisions. Autonomy refers to the phase in which teens are beginning to assert more
control over their lives, to make more decisions for themselves, to self-govern, and
to challenge parental values. Treatment decisions need to be made and enforced by
the parents of minors. Once the adolescent turns 18 years of age, the family remains
involved, but no longer has the same level of authority or responsibility. Regardless
of the individual’s age, it is vitally important to have the support of the family.
In the care of adolescents with AN, all aspects of clinical interventions are played
out against this backdrop of rapid physical, psychological, and social developmen-
tal changes. At the beginning of adolescence, parents are still largely responsible for
all aspects of health and treatment. By the end of adolescence, medical issues and
decision-making will be almost entirely the responsibility of the transition-age
youth, 18 years of age and older. This shifting and juggling of effective clinical
relationships with both parents and teens underlies good clinical care and shared
responsibility for following recommendations of treatment and promoting accep-
tance and adherence to therapeutic goals. How these challenges play out impacting
treatment nonadherence will be the focus of this chapter.
One crucial reason of treatment acceptance and adherence in the care of young
people with AN is the high rate of mortality for the eating disorders. A recent paper
by Papadopoulos and colleagues studied more than 6000 individuals with AN over
3 Coming of Age and Refusing to Eat: Overcoming Treatment Nonadherence… 33
30 years in Sweden. Results indicated that overall those with AN had a sixfold
increase in mortality compared to the general population. Reasons for death included
starvation, substance abuse, and suicide. Interestingly, these authors also reported
an increase rate of death from “natural” causes, such as cancer [2].
Other studies in the United States also included the other eating disorders, such
as bulimia nervosa (BN) and eating disorder not otherwise specified (EDNOS) over
8–25 years. These investigators [3] used computerized record linkage to the National
Death Index for the entirety of the United States and found striking results. Crude
mortality rates were 4.0% for AN, 3.9% for BN, and 5.2% for EDNOS. Since these
death rates are among the highest for psychiatric disorders, the severity and public
health significance of the failure of treatment acceptance and adherence must be
addressed as actively as possible when working with these young people with eating
disorders.
An Overview of AN
AN is an eating disorder characterized by an abnormally low body weight, an

intense fear of gaining weight, and a distorted perception of body configuration.
Youth with AN place a high value on controlling their weight and shape, using
extreme efforts that tend to significantly interfere with their lives.
To prevent weight gain or to continue losing weight, individuals with AN usu-
ally severely restrict the amount of food they consume. They may control calorie
intake by self-induced vomiting after eating or by misusing laxatives, diet aids,
diuretics, or enemas. They may also try to lose weight by exercising excessively.
No matter how much weight is lost, the person continues to fear weight gain and
feels fat. Unfortunately, many people with AN do not accept treatment, at least
initially. Their desire to remain thin overrides concerns about their health. It is as
though the illness has taken over their wise mind. Clinicians need to partner with
the adolescent patient and their parents, in order to combat the illness. Even in the
context of a strong therapeutic alliance, adherence to treatment in AN is
challenging.
hat Is the Etiology of AN?

W
The exact cause of AN is unknown. As with many diseases whose etiologies are not
understood, the etiology is considered to be multifactorial, a combination of bio-
logical, psychological, and environmental factors. It is generally believed that
genetic factors put some people at higher risk of developing AN, and this, together
with certain psychological features, such as obsessive-compulsive personality and
premorbid obsessive-compulsive disorder, may facilitate severe starvation. At the
same time, it cannot be ignored that most cultures today emphasize and
reward extreme thinness as socially desirable and equated with worth and success,
especially in young women.
edical Complications of AN

M
Other important factors to the importance of adherence to AN treatment are the
numerous health complications of the disorder, including but not limited to anemia,
abnormal heart rhythms (arrhythmias), bone loss (osteoporosis), loss of muscle,
gastrointestinal problems, and kidney problems, or an imbalance of electrolytes –
minerals such as sodium, potassium, and calcium that maintain the balance of fluids
in your body. In severe malnutrition, every organ in the body can be damaged,
including the brain, heart, and kidneys. This damage may not be fully reversible,
even when AN is in remission.
In addition to these many physical complications, individuals with AN also com-
monly have other mental health disorders as well, which may include depressions,
anxiety, alcohol and substance misuse, obsessive-compulsive disorders, and person-
ality disorders, as well as a possible history of abuse and/or trauma. Also, self-injury
and suicidal thoughts or attempts may be present for some. As can be seen by this
picture, the task is daunting, and as with other psychiatric disorders, often only 30%
of individuals with AN show sustaining improvements with time [4].
In our experience, rarely does AN present as the sole form of psychopathology.
Both mood disorders and anxiety disorders are the most common forms of comor-
bidity, although earlier investigators considered depression as the most prevalent
form of co-occurring disorder. Given the prevalence of traumatic experiences in
youth as a nonspecific risk factor, many individuals may also have posttraumatic
stress disorder or at least symptoms of psychic trauma. We have cared for individu-
als with schizophrenia and bipolar disorder both co-occurring with AN. In fact,
obsessive-compulsive disorder (OCD) may be a significant premorbid condition
serving as a risk factor in young girls for the development of AN. Alcohol and other
forms of substance abuse also can co-occur. In order to properly care for an indi-
vidual with AN, it is necessary to treat the co-occurring disorders as well. Thus, it is
not uncommon to find individuals with AN being cared for in substance abuse pro-
grams and trauma treatment programs as well as in programs devoted to care for
OCD, depression, or bipolar disorder. The more complex the individual psychopa-
thology is, the more challenging it is to engage the person in the total treatment plan.
What Are the Factors That Affect Adherence?
The World Health Organization (WHO) [5] has outlined five factors that impact
adherence to treatment. These include social and economic factors, healthcare team
and system-related factors, condition-related factors, therapy-related factors, and
patient-related factors.
The most prominent social and economic factors impacting the treatment of AN
are the state and federal laws implemented to cover medical insurance for patients
and families. Currently, America not only does not have universal health coverage,
but recently, there have been further attacks to the prevailing federal insurance pro-
grams. State-managed care companies and private or public insurance organizations
mainly focus on cost-efficiency in determining level and length of care for AN rather
than professional treatment guidelines, such as the American Psychiatric Association

(APA) [6, 7], or expertise of clinicians and treaters. Issues of adherence for treatment
of AN often come into conflict with this decision-making financial companies trying
to avoid the inpatient care often needed for weight restoration of the medically com-
promised AN patients. Many programs that are insurance driven have limited length
of stay, due to their definition of medical necessity, and therefore are often inade-
quate to address recovery goals. This contributes to relapse, the false message that
treatment is no longer medically necessary, and a higher mortality rate.
A fundamental social factor impacting nonadherence for individuals with AN is
the larger cultural embrace of an emaciated body type to typify female beauty. It is
perhaps not surprising that following the 1960s women’s liberation movement and
widespread introduction of birth control pills; there was a seismic change in society
from the voluptuous pinup girls of the 1950s to the first of the new Bohemian mod-
els, Twiggy, whose body resembled an 11-year-old boy. Fifty years later, girls and
women everywhere are still struggling to attain this ideal of an unrealistic, unhealthy
body and being rewarded by compliments for the efforts involved. Many young
patients have reported the compliments and attention after weight loss and the sub-
sequent improved self-image and self-worth. This includes positive feedback from
family members, who often collude with the patient against the treatment team. In
many of these families, there can either be a history of obesity, often accompanied
by frequent dieting, or an eating disorder.
Healthcare Team and Health System-Related Factors
The weight status of treatment providers may be an issue for some patients. Having
an overweight or obese therapist or physician may trigger the patient to feel fright-
ened of recovery. Comingling patients in treatment programs who are underweight,
with others who are overweight, can be frightening for the underweight patients. In
addition, when a treatment team member is pregnant, their changing body may
heighten the anxiety of the adolescent struggling with feeling fat.
Condition-related factors, such as co-occurring conditions, such as OCD or
depression, may make the person either too anxious or too unmotivated to follow
the treatment plan. Therapy-related factors, such as known medication side effects,
known to include weight gain, may lead to refusal to take the medication, despite
the need to gain weight. This was evident in a study by Kafantaris and her col-
leagues [8] with olanzapine. Once patients understood the potential side effects, the
dropout rate from the study was very high. With the advent of the Internet, adoles-
cents investigate side effects and treatments. This may lead to increased treatment
refusal.
Patient-related factors that may impact nonadherence include a family history of
an eating disorder or obesity which may make recovery more challenging. The per-
son with AN who has an overweight or obese family member may be afraid that if
they reach their weight goal, they too will become obese. If a parent, most often
mother, has AN, she may make critical comments to her child about their weight
gain. Families have been noted to tell their child with AN “the doctors are trying to
make you fat.” In some instances, despite education, Child Protective Services
(CPS) may need to be notified if the parent colludes with the adolescent against the
treatment team.
Selective Brief Review of the Literature

A
As outlined in a report from England, MARSIPAN by the Royal College of Physicians
[9], in their discussion of when is it appropriate to consider compulsory treatment for
really sick patients with AN, the following is noted: “It is sometimes difficult to
accept that a highly intelligent and articulate person who promises to accept and
adhere to treatment may in fact be completely unable to do so as a result of a poten-
tially fatal drive for thinness.” We will provide a brief and selective review of some
of the research which attempts to understand the factors contributing to difficulties in
compliance and adherence to following treatment protocols and goals. These diffi-
culties ultimately result in refusal to comply and nonadherence of recommendations
of the medical and clinical goals. A recent study in Spain [10] of patients in an eating
disorders unit found that adherence of psychopharmacological prescriptions resulted
in higher 5-year full recovery rate and was associated with lower medication costs.
In addition, there was a greater frequency of self-harm behavior and psychiatric
comorbidities in the nonadherence group. Another review of clinical research [11]
also highlighted that obsessive-compulsive personality disorders and related traits,
such as perfectionism and rigidity, seem to be factors which contribute to the contin-
ued risk and maintenance of AN, that is, in direct opposite to the goals of treatment.
In terms of adult patient adherence to therapy for AN, no single psychological
treatment has demonstrated clear superiority over other psychological treatments
[12]. However, for adolescents with AN, various forms of family therapy have
shown good rates of adherence for up to 1 year of treatment [13].
Halmi [14] discusses treatment resistance as expressed in the core psychopathol-
ogy of eating disorders, both AN and BN. Halmi describes this psychopathology as
a coping mechanism to deal with adverse life events, which is refusal of treatment.
The greater the severity of preoccupations with body image, weight, eating, and
exercising predicts greater resistance to treatment. In addition, a diagnosis of an
anxiety disorder and severe perfectionism further confers treatment resistance.
Patient traits such as perfectionism, cognitive inflexibility, and negative affect (all
with probable genetic influences) also affect treatment resistance. Atypical antipsy-
chotic drugs have shown some effect in treatment-resistant AN.
Researchers following 41 adolescents with AN for almost 3 years found that
depression was not associated with noncompliance; however if depression was pres-
ent at intake, it was associated with poor outcome on follow-up, and depression
remained present for two-thirds of the cohort [15]. A more recent retrospective study
of treatment-resistant inpatients with AN (46) and BN [14] found that high acceptance
and compliance at admission was associated with lower levels of body image distur-
bance, less disordered eating behaviors, and higher rating of overall treatment success
at discharge. Furthermore, acceptance of treatment at admission predicted a higher
BMI at discharge for AN. These authors discuss strategies to improve compliance,

including the role for motivational interviewing [16]. In some situations, it may be the
parents of children with AN who are not accepting treatment recommendations, and
these youth may become nonadherent to treatment team’s recommendations, and sub-
sequently CPS must be involved according to state laws [17].
An example of healthcare system issues which contribute to nonadherence is the
lack of strong empirical evidence to support treatment recommendations for adoles-
cents with AN. This is best described in the National Institute for Health and Care
Excellence (NICE) guidelines [18] for the treatment of eating disorders, a series of
recommendations [19]. No specific recommendations were made for AN, due to the
rigor with which it evaluated supporting research from well-conducted randomized
trials and their clinical relevance. This clearly points to the urgent necessity for
further research of treatment for AN for adolescents. Since that time, FBT has been
shown to be effective for youngsters living at home with families who are able to
manage taking control for their eating, together with the support of the treatment
team [20]. CBT has also shown promise with this population [21].
There is very limited evidence for the use of pharmacotherapy in the treatment of
AN. The mainstay of clinical intervention for AN is nutritional rehabilitation, medi-
cal stabilization, and psychotherapy. For the child and adolescent patients, family
therapy has been shown to be effective. There are many studies describing the use
of psychopharmacology in the treatment of AN. However, on the whole, the research
results have not contributed to improvements in the clinical presentation of adoles-
cents with AN. Thus, we will only focus on the very limited number of research
findings with possible positive outcomes. In fact, it is important to recognize that no
medications have been approved by the United States Food and Drug Administration
(FDA) for the treatment of AN.
Individuals with AN rarely present without comorbid psychopathology, includ-
ing depression, anxiety, and obsessive-compulsive symptoms. Tricyclic antidepres-
sants (TCA) and, later on, the specific serotonin reuptake inhibitors (SSRIs) have
been studied in the treatment of the anxiety and depression in AN. Both TCAs and
SSRIs failed to demonstrate superiority over placebo for the treatment of
AN. Research studies demonstrated no significant differences in adherence for the
SSRIs [22] and TCAs as compared to placebo [23].
Second-generation antipsychotic (SGA) medications, including risperidone,
aripiprazole, and olanzapine, have been studied in the treatment of AN. The weight
gain side effects, commonly reported with the SGAs, have been used for the benefit
of underweight patients with AN with the goal of weight restoration. Studies have
not shown that SGAs are consistently better than placebo [24]. As further research
explores the potential role of this category of medications, issues of medication
adherence will be clarified. In our own clinical experiences, when adolescents
learned of the weight gain side effect of SGAs, it led to discontinuation of the medi-
cines by many of the patients.
The following two clinical vignettes have been de-identified and disguised in
order to protect patient confidentiality.
ase Vignette # 1
C
Although Joan did not know why she felt fat even though underweight, she recalled
that she had been thinking about feeling fat as far back as she could remember. “My
mother greeted me in the morning by saying ‘good morning’ and asking me whether
her outfit made her look fat.” In elementary school, Joan had frequent belly aches.
Joan’s mother tried to suggest that Joan eat less in an effort to try and minimize the
pain. While at a birthday party at age 10, Joan recalls that her best friend’s mother
approached her mother and exclaimed: “I am so jealous of you- you are so thin!”
Joan realized then that being thin was a really desirable thing, and she worried what
might happen to her if she herself were not thin.
By the seventh grade and age 12.5 years, Joan struggled with feeling fat and
refusing to eat sufficiently to reach her goal weight. At a height of 62 inches, Joan
weighed 82 lbs, with a body mass index of 15, in the underweight range (a BMI
below 17.5 is usually present in people suffering from AN). Joan adamantly tried to
convince her treatment team as well as her parents of her need to remain at her cur-
rent weight. Joan had the support of her friends who agreed that she should not be
forced “to become fat.” Joan’s mother promised Joan that she will not force her to
reach “the crazy weight goal” that the doctors expected. “I would never let them
make you fat,” exclaimed Joan’s mother.
Secretly, Joan has believed that if she were forced to gain weight, she would
rather be dead. When alone, Joan often wonders whether she would hang herself in
her closet or jump in front of a train as a means of killing herself. Joan recognizes
that if she took pills or tried to cut herself, it might not succeed in accomplishing her
goal of dying. Joan has lost interest in many of her previous activities and reported
to her mother that she did not see a future for herself. Joan had written these thoughts
in her diary. When Joan was in school, Joan’s mother went through her room and
read her diary.
Frantic, Joan’s mother made an emergency appointment for a consultation for
fear that her daughter might end her life. Joan reassured the clinician that she was
safe, however, wished to have the support of the team not to have to gain weight.
While in the doctor’s office, Joan’s mother informed the doctor that she did not
believe that Joan needed to regain her weight and that she should be allowed to
remain underweight. “Unless you can accept this, I may need to find a different doc-
tor for my child,” explained Joan’s mother. An effort was made to educate Joan and
her mother about AN. Privately, the doctor spoke with Joan’s mother about her own
eating history and whether she had ever sought consultation for her own weight-
related concerns. Joan’s mother was informed that her daughter’s recovery would
require weight restoration.
Furious at the treatment team, Joan’s mother expressed the desire to file a com-
plaint against the treatment team. Ultimately, Joan was admitted to the adolescent
medicine unit of a suburban children’s hospital for inpatient weight restoration and
then transferred to the Eating Disorders Day Treatment Program where Joan
remained for 4 weeks. Despite Joan’s verbal refusal to comply, Joan did reach her
goal weight, and, despite her complaints, Joan’s mother did comply with the treat-
ment plan. CPS was not notified; however, the mother had been informed that in the
event that Joan was withdrawn from treatment prematurely against medical advice,
CPS might have to be notified in order to protect Joan.
ase Vignette # 2
C
Carol always appreciated how strong and powerful her father had been, although
she never understood why he would get so angry at her mother. Now, 16 years old,
in the tenth grade, Carol struggled with feeling like she could never be good enough.
Carol spends a long time doing and redoing her homework, in order to make it per-
fect. Carol worries that if she does not get 100%, she might fail.
Often during her childhood, she would overhear her parent’s loud arguments. Twice
she heard what sounded like furniture falling and she remembers screaming. On both
occasions her mother reassured her that everything was fine. Once, her mother had a
black eye. Carol reports that her father enjoyed drinking bourbon when he arrived
home from work and that her mother would often have a glass of white wine in her
hand in the evening. Sometimes, Carol would find her mother asleep in the armchair at
8 pm, and Carol would awaken her to go to bed. Carol does not remember spending
time with her father. He worked long hours and when he would return home from work
would often say that he needed to relax and rest. Carol’s mother did not spend much
time with her husband. Carol thought that this was the way most families lived.
Carol’s parents separated when Carol was 13, and she remembers her mother
screaming that she was “done.” Carol did not understand what was going on and
worried that they might need to move. Carol worked hard in school. At home, Carol
did whatever she could to help her parents. Carol hoped that with her help, they
might not fight so much. Somehow, despite Carol’s efforts, the parents separated.
Carol felt that this was her fault, even though her mother had reassured her. “Perhaps,
I could have done more?” Carol wondered.
Carol avoided conflict, struggled with expressing herself, and felt inadequate. “If
only I were smarter?” Carol would say. Carol kept her room immaculate, often rear-
ranging her bookshelves each night in order to make sure that they were perfectly
aligned. Carol lost about 20 lb in the tenth grade, and her period had stopped for
6 months. Carol never liked the way she looked, always feeling that others looked
better than she did.
Addressing the Factors That Impact Adherence
In the first clinical vignette, Joan grew up in an affluent family and community
where thinness was highly valued and fat was abhorred. In order to care for Joan,
the treatment team needed to educate and explain to Joan and her parents the impact
of the social and cultural pressure for this unhealthy and unrealistic body ideal.
Due to Joan’s mother’s refusal to allow weight restoration, CPS was notified in
order to protect Joan from the possible dire consequences of this condition and
patient-related (Joan and her mother) factor of treatment nonadherence. As was seen
in this case, the patient’s mother herself appeared to be suffering from an eating
disorder. As a result of the mother’s distorted beliefs, she colluded with her daughter
against the treatment team’s plan. This constituted medical neglect given the sever-
ity of her daughter’s condition. Sometimes this is presented as a mild resistance
which can be improved in the short run with psychoeducational support to the fam-
ily. At other times, it is important for the team to recognize when it is serious.
As criteria for inpatient admission become more stringent and length of stay in
hospital shorter, the severity of individuals with eating disorders in the community
has increased. As a result of this health system-related phenomenon, patients who
would have been inpatient for extended periods of time are now being seen and fol-
lowed as outpatients. Since we are in a tertiary university-based care center, we have
experienced an increase of reports to CPS for suspected medical neglect.
In the second clinical vignette, Carol’s condition and patient-related factors of
perfectionism predisposed her to food- and weight-related concerns as an adoles-
cent. When Carol was evaluated psychiatrically, the impression was she met criteria
for obsessive-compulsive disorder (OCD), and medication and CBT was recom-
mended. In addition, trauma-focused CBT was recommended for Carol with the
history of family trauma. Alcohol treatment was recommended for Carol’s mother.
The treatment team in the outpatient department included Carol’s psychiatrist, her
cognitive behavioral therapist, her adolescent medicine pediatrician, and the addic-
tion specialist that Carol’s mother was referred to. The team met weekly to review
Carol’s weight, anxiety, and her mother’s attendance at her alcohol treatment pro-
gram. The close coordination and communication of the treatment team supported
the acceptance and adherence of the overall treatment plan. Fortunately, these treat-
ments were available in Carol’s community, and the family had access to these
health system-wide care resources.
What Are the Interventions to Improve Adherence?
Efforts to engage the patient and develop a strong therapeutic alliance with the family
are important to enhance treatment acceptance and adherence. Staying the course and
educating the adolescent and the family about the illness and the course of treatment
is critically important. In our clinical experience, this may need to be done repeatedly,
often every week to enhance compliance for both patient and family. Even when we
think that both the patient and the family are engaged and have accepted the diagnosis
and treatment plan, it is not uncommon that they challenge the need to follow what is
recommended. This is exemplified by parents often joining with the anorectic adoles-
cent, promising that the weight goals do not need to be met, as described previously
in the first clinical vignette. Evaluation of the adolescent and the need for medical
stabilization when the emaciated patient insists that they are not underweight is an
essential task. Recognizing co-occurring disorders and treating them allows for a
more effective treatment. Rarely do eating disorders occur as the sole form of psycho-
pathology. No meaningful recovery can occur while malnourished.
Clinicians must pay particular attention to take the time to actively listen to the
patient and the family. Time pressures in the current healthcare environment collide
with this valuable function of the therapeutic relationship. Understanding the
patient’s and the family’s previous history and narrative dramatically improves
acceptance of the diagnosis and adherence to treatment. This remains an area that
needs to be continuously monitored and nurtured throughout the clinical care of the
illness.
Motivation is an important predictor of change in AN, and preliminary evidence
supports the fact that motivational interviewing improves motivation and decreases
eating pathology in this population at 6-week follow-up [25].
Caring for adolescents with AN requires a multidisciplinary team approach. The
treatment team must meet and communicate regularly and have a mechanism to
contact each other in between team meeting, as clinically necessary. These chal-
lenging patients and their families will often attempt to split team members render-
ing the treatment less effective. The team needs to be sensitive and monitor in order
to maximize adherence.
Conclusion
A clearer understanding of the etiology of AN may enhance treatment outcome.

Similar to other medical illness, the diagnosis of the eating disorder drives the goals
of treatment. It is critically important for families and providers to better understand
the nature of AN and how the core symptomatology often contributes to the lack of
acceptance of the diagnosis and treatment recommendations. A strong clinical alli-
ance, coupled with empathy and clear communication, is essential to care for these
seriously ill young people. Free will, and the capacity to refuse treatment, remains
an area deserving further exploration. The general public, as well as many health-
care providers, continue to believe that individuals with AN have the capacity to
refuse treatment, even when it is the disorder that is refusing the treatment, not the
person. Future research is critical in order to further understand the necessary com-
ponents to increase motivation for treatment for adolescents with AN and to improve
acceptance and adherence.
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The Challenge of Nonadherence
in Schizophrenia 4
Ryan E. Lawrence and Lisa Dixon
Introduction
Treatment nonadherence is an especially challenging obstacle in the treatment of

individuals with schizophrenia. Available antipsychotic medications have signifi-
cant side effects, carry social stigma, and do not always produce the intended ben-
efits. Individual and group psychotherapies involve a commitment of time, energy,
and finances, and some patients might not believe the benefits outweigh the costs.
Moreover, schizophrenia itself is an illness that can rob persons of insight into the
need for treatment, leaving the patient uninterested in medications, psychotherapy,
or social interventions. This chapter will review empirical evidence surrounding the
problem of nonadherence, as well as the evidence associated with several interven-
tions that are intended to reduce nonadherence.
Research on treatment adherence and nonadherence often turns to whether
patients are taking medications. However, because schizophrenia is an illness
with biopsychosocial ramifications, optimal treatment involves more than just
medication. Kreyenbuhl and colleagues (2009) use the language of engagement
and disengagement from mental health treatment and include various examples of
disengagement: missed initial appointments, referral failures from emergency ser-
vices, nonadherence with aftercare following psychiatric hospitalization, gaps in
contact, and persons who are otherwise lost to follow-up [1]. While this chapter
R. E. Lawrence (*)
Columbia University Medical Center, New York – Presbyterian Hospital Allen Hospital,
New York, NY, USA
e-mail: rel2137@cumc.columbia.edu
L. Dixon
Division of Behavioral Health Services and Policy Research and Center for Practice
Innovations, Columbia University Medical Center, New York State Psychiatric Institute,
New York, NY, USA
e-mail: Lisa.Dixon@nyspi.columbia.edu

https://doi.org/10.1007/978-3-030-12665-0_4
44 R. E. Lawrence and L. Dixon
will focus on adherence to medication, it is important to understand that adher-

ence to medication treatment occurs within the larger context of adherence to and
participation in other treatment elements. Further, while this chapter focuses on
adherence, adherence is not the goal of treatment. Within recovery-oriented prac-
tice, adherence is valuable if it helps patients achieve their goals, whatever those
goals may be.
The Problem of Nonadherence
Engagement
The first challenge that occurs, even before nonadherence and discontinuation can
occur, is the problem of engagement, identifying appropriate persons who might
benefit from treatment and engaging them in treatment. Individuals diagnosed with
schizophrenia experience a variety of pathways to receiving psychiatric treatment.
Families will often attempt to bring a loved one for treatment as when an adolescent
is brought to the emergency room because of new-onset paranoia. In other instances
patients self-refer. However, it cannot be assumed that persons with schizophrenia
will always present for treatment. There is limited research about how often schizo-
phrenia goes unrecognized or untreated in the community. Data from the National
Comorbidity Survey, now decades old, estimated that 6% of Americans met criteria
for a serious mental illness (SMI) in the prior 12 months (nonaffective psychosis,
severe bipolar disorder, major depression, panic disorder) and less than half (46% of
persons with SMI) obtained treatment during those 12 months. Many did not believe
they needed treatment (55% of persons with SMI), wanted to solve the problem on
their own (72% of persons with SMI who perceived themselves as needing help), or
believed the problem would get better on its own (61% of persons with SMI who
perceived themselves as needing help) [2].
In addition to concerns about whether a person presents for treatment, there are
also concerns about when the person presents. In high-income countries, the dura-
tion of untreated psychosis (the time from symptom onset to first receiving antipsy-
chotic treatment) has averaged 63 weeks, and it exceeds two years in lower- and
middle-income countries (average 125 weeks) [3]. Early engagement is important
because prompt intervention with antipsychotic medications may improve out-
comes. In a review and meta-analysis of literature on nonaffective psychosis patients
at or near the beginning of their treatment, a shorter duration of untreated psychosis
was associated with greater response to antipsychotic medications, including
improvements in global psychopathology, positive symptom severity, and negative
symptom severity [4]. More comprehensive treatment strategies, utilizing medica-
tion management, individual resilience therapy, family therapy/psychoeducation,
and supportive employment were studied in the RAISE-ETP trials (Recovery After
an Initial Schizophrenia Episode Early Treatment Program). At two-year follow-up,
compared with usual care in the community, persons who received the intervention
did significantly better on the Quality of Life Scale, the Positive and Negative
Syndrome Scale, the Calgary Depression Scale for Schizophrenia, the length of
4 The Challenge of Nonadherence in Schizophrenia 45
time staying in treatment, and the degree of improvement in work/school engage-

ment. Importantly, persons with shorter duration of untreated psychosis (shorter
than the median 74 weeks) derived more benefit and had lower average cost than
persons receiving usual care in the community (persons with longer duration of
untreated psychosis showed increased cost over usual care) [5].
Challenges for Studying Medication Nonadherence
When the scope is narrowed to the topic of medication nonadherence, a number of

challenges arise that make it a difficult area to study empirically. To begin, defini-
tions of adherence vary, since they must account for how many doses are taken, the
timing of those doses, and the time span over which data are collected. Some reports
have considered patients adherent if they take medications as prescribed 75–80% of
the time, while others report adherence as a percent of doses taken (which can range
from 0% to more than 100%). Rating scales include the Brief Adherence Rating
Scale, Buchanan criteria, Compliance Rating Scale, Medication Adherence
Questionnaire, Service Engagement Scale, and the Visual Analogue Scale for
Assessing Treatment Adherence. Strictly speaking, there is no consensus on the best
way to assess or report treatment adherence, which contributes to a wide range of
reported adherence rates [6, 7]. The PhenX Toolkit (consensus measures for pheno-
types and exposures) has an Early Psychosis Clinical Services Specialty Collection.
The toolkit recommends the Brief Adherence Rating Scale which asks patients, in a
few different ways, to self-report how many days/doses they missed [8].
Adherence rates are sometimes estimated using clinical trials data. However
these data may not be representative of all patients in the community, since patients
who are not interested in treatment are unlikely to volunteer for pharmacological
research trials and persons with a history of low adherence are likely to be excluded
from clinical trials [9].
Several techniques have been used to assess treatment adherence (each with
drawbacks). These include directly observing medication administration (impracti-
cal for routine use), measuring metabolites or biological markers in the blood or
urine (intrusive, expensive, may not detect intermittent dosing), asking patients to
complete questionnaires or self-reports or diaries (patients can misremember or
misreport), counting pills (patients can discard pills rather than ingest them), track-
ing prescription refills (a refill is not the same as taking medication), assessing clini-
cal response or measuring physiological markers (many factors affect response and
metabolism can vary), and using electronic medication monitors (expensive) [6, 7].
Research across many medical and psychiatric conditions suggests patients tend
to be evenly distributed across six adherence groups: some attain near perfect adher-
ence, some take all doses but with some timing irregularity, some miss an occa-
sional single day’s dose and have some timing inconsistency, some take drug
holidays three to four times a year with occasional dose omissions, some take drug
holidays at least monthly and have frequent dose omissions, and some take few or
no doses while giving the impression of good adherence [6]. Deciding which of
these patients to consider adherent is a complicated task.
Estimates of Medication Adherence in Schizophrenia
Acknowledging these complications, estimates of treatment adherence do exist.

Among individuals with schizophrenia, mean rates of medication adherence are
often reported between 40% and 60%. Rates vary widely between studies, depend-
ing on the methodology and definitions used. Some studies estimate that 75–90% of
patients become nonadherent within 2 years of discharge from the hospital [7]. For
context, it is worth mentioning that medication adherence is a problem across all
illnesses, with adherence rates averaging 50%, and with no evidence for substantial
change in the past 50 years [10].
Beyond medication adherence, 24% of individuals with psychosis do not attend
appointments as scheduled. Across several studies, 18–67% of patients (median rate
58%) fail to attend the first outpatient appointment after being discharged from the
hospital. After engaging in treatment, 30% of patients disengage [1].
Factors Affecting Adherence
The World Health Organization has proposed that adherence is a multidimensional

phenomenon determined by the interplay of five factors (Table 4.1) [11]. While the
number of factors and their precise definitions could be debated, this observation
that adherence is multifactorial is well taken. The World Health Organization did
not discuss schizophrenia specifically when elaborating on these factors. The review
below discusses the importance of each factor for persons with schizophrenia, along
with available empirical findings.
Social and Economic Factors
A number of societal factors affect how easily a person can remain adherent to treat-
ment. In developing countries, persons of low socioeconomic status may be forced
to choose between competing priorities, and schizophrenia treatment might get
crowded out by other demands. In some regions mental health services are few and
far between, and medication formularies are limited, which can make treatment
adherence all but impossible [11].
In developed countries, such as the United States, social and economic barriers
to treatment also exist. Poverty, illiteracy, low education, high treatment costs, and
transportation problems exist in all societies.
Research into the relationship between social factors and treatment adherence in
schizophrenia has suggested higher adherence rates among persons who are married
and females, with mixed evidence for social or family support having an effect
(Table 4.2). In a Swedish study, social stigma (measured by the Discrimination and
Stigma Scale) was not associated with medication adherence rates [12].
Table 4.1 Factors affecting adherence and interventions to improve adherence in schizophrenia
Interventions to improve
Factors affecting adherence adherence
Social and economic factors Low socioeconomic status Improve access to
treatment
Low education levels Mobilize community
supports
Gender differences
Low access to medications and
mental health services
Health-care team- and health Weak patient and clinician Court-ordered treatment
system-related factors relationship
Lack of follow-up Assertive community
treatment
Digital health
technologies
Condition-related factors Symptom severity Treat symptoms and
comorbidities
Poor insight Support insight
Overall disability Involuntary
hospitalization
Comorbid substance use
Therapy-related factors Complicated dosing schedules Simple dosing schedules
Medication side effects Addressing side effects
Patient and clinician having Long-acting injectable
different treatment goals medicine
Patient-related factors Negative attitudes Motivational
interviewing
Lower subjective well-being Compliance therapy
Less education and employment Cognitive behavior
therapy
Financial incentives
Health-Care Team- and System-Related Factors
The World Health Organization identified the patient-provider relationship, medica-

tion distribution systems, health-care provider training, short appointments, and
lack of follow-up as health-care team- and system-related factors that negatively
affect adherence [11].
Research suggests that both medication adherent and nonadherent patients can
feel they have a good relationship with their physicians, but nonadherent patients
have less trust in their physicians and have lower expectations that physicians would
be helpful in the treatment. Difficulties in building a therapeutic alliance and poor
clinician-patient relationships have been identified as significant predictors of non-
adherence [13].
Table 4.2 Results of a systematic review of literature on factors influencing medication adher-
ence among patients with schizophrenia spectrum disorders, published between 1980 and 2012
(final n = 13 articles)
Number of studies showing
Factors associated with better treatment adherence an association
More positive attitudes to medication 5
More insight into the illness 4 (2 found no association)
Less severe symptoms 3 (6 found no association)
Fewer side effects 3 (6 found no association)
Married status 1
Higher education level and active employment 1
Female gender 1
Better awareness of need for antipsychotics 1
More trust in medications 1
Higher subjective well-being 1
Later stages of illness 1
Absence of cannabis use 1
Lower rates of substance and alcohol use 1
Lower rates of medication refusal in early stages of treatment 1
More social or family support Mixed evidence
Better neurocognitive functioning (5 found no association)
Antipsychotic type and route 0 studies found association
Data are from Sendt et al. [7]
Condition-Related Factors
Condition-related factors that impact adherence include symptom severity and the
overall level of disability [11]. For persons with schizophrenia, this might include
paranoia about mental health providers, disorganization that makes it difficult to
take medications when and how they are prescribed, or negative symptoms that lead
to social isolation or withdrawal and less contact with mental health providers.
Schizophrenia is also a condition that can reduce insight into the pathological
nature of symptoms, which influences a person’s decisions about accepting treat-
ment. Research has shown that poor insight is associated with negative attitudes
toward taking antipsychotic medication, decisions to decline pharmacological treat-
ments, and medication discontinuation at 1-year follow-up. Poor insight is also pre-
dictive of discontinuing cognitive behavior therapy [14].
In addition to lower levels of insight, there is also evidence that less awareness of
the need for antipsychotics, more severe symptoms, and comorbid substance use
contribute to lower rates of medication adherence (Table 4.2).
Therapy-Related Factors
Prior treatment experiences, the complexity of the treatment regimen, the duration
of treatment, side effects, and the immediacy of beneficial effects are thought to be
important therapy-related factors that can affect adherence [11].
Curiously, schizophrenia research has not found a consistent link between treat-
ment adherence and antipsychotic selection (neither type nor route of administra-
tion). Similarly, side effects are not associated with adherence rates in most studies
(Table 4.2). Nevertheless, treatment plans that are complicated or that do not align
with patients’ goals are unlikely to be followed.
Patient-Related Factors
The large category of patient-related factors represents the resources, knowledge,

attitudes, beliefs, perceptions, and expectations of the individual patient [11].
Schizophrenia research suggests that adherence rates are lower for patients with less
positive attitudes toward medications, less trust in medications, lower subjective
well-being, less education, and less employment (Table 4.2).
Interventions to Improve Adherence
Various interventions have been attempted with a goal of improving treatment

adherence, and they can be organized around these same five factors. In almost
every case, the intervention addresses more than one factor, even when one factor is
the predominant target. The emphasis here is not to demarcate rigidly which inter-
vention targets which factor but to illustrate that different interventions can address
different adherence-related factors.
Social and Economic Interventions
At the policy-maker level, the World Health Organization recommends address-

ing poverty, access to health care, and illiteracy and also providing social sup-
port networks and mechanisms for delivery of health services that are sensitive
to cultural beliefs about illness and treatment and are affordable for patients and
families [11]. Research data for these high-level and far-reaching goals are not
readily available, especially as they might pertain to schizophrenia treatment
adherence. However, the absence of data does not diminish the importance of
the goals.
Health-Care Team and Health System Interventions
The World Health Organization emphasized the importance of educating clinicians

about treatment adherence problems, providing clinical tools for assessing treat-
ment adherence, and developing interventions for adherence problems that emerge.
Improving communication between patients and clinicians and minimizing gaps in
the provision of care are two more goals of equal importance [11].
Three interventions, each involving the health-care team and health system, will
be reviewed here: court-ordered outpatient treatment, assertive community treat-
ment (ACT), and digital health technologies.
When patients are not adherent to outpatient treatment, one recourse is to seek a
court order mandating treatment. The process goes by various names (e.g., com-
munity treatment orders, assisted outpatient treatment, involuntary outpatient treat-
ment), and the details of who qualifies and what the orders entail vary from place to
place. They commonly give clinicians the authority to supervise patients with severe
mental illness in the community and to bring them to a hospital if necessary [15].
Data on the effectiveness of court-ordered treatment are mixed. Three random-
ized controlled trials showed no evidence that community treatment orders affect
hospital admission rates, the number of inpatient days, or utilization of mental
health services in the community [15].
Administrative records from the New York Office of Mental Health suggest that
assisted outpatient treatment is associated with increased medication adherence.
Adherence was measured using the Medication Possession Ratio, with adherence
defined as picking up at least 80% of prescribed medication from the pharmacy or
receiving a long-acting injectable for the month. Adherence was improved in particular
when assisted outpatient treatment was combined with assertive community treatment.
Duration seems to make a difference. When the order lasted less than 6 months, medi-
cation adherence dropped significantly after the order stopped, but when the order
lasted more than 6 months, increased adherence rates were sustained [15]. While these
data are not from clinical trials, they still provide some evidence for a beneficial effect.
While the efficacy data for court-ordered treatment are weak, this probably indi-
cates that it is a difficult intervention to study more than it indicates that the inter-
vention is ineffective. Even if court-ordered treatment does not robustly change
adherence rates, it might still be useful for identifying patients that are at high risk
for nonadherence and symptom recurrence.
Assertive community treatment (ACT) teams emphasize a team-based approach,
low patient-to-staff ratios, individualized services, and frequent contacts between
patients and staff in the community. Teams accept full responsibility for addressing
their clients’ health-care needs and provide practical assistance to support treatment
adherence. ACT has been shown to decrease the use of inpatient psychiatric services
among persons with severe mental illness, especially among persons with frequent
inpatient hospitalizations prior to enrolling in ACT [16].
Administrative data on medication adherence is available from the Veterans
Health Administration (VA), which included persons with schizophrenia who
enrolled with an ACT team and matched controls who were eligible for ACT ser-
vices but did not enroll. ACT enrollment was strongly associated with good antipsy-
chotic medication adherence (using the Medication Possession Ratio), and the
association persisted for over 24 months. Moreover, among patients enrolled with
ACT, higher use of ACT services was associated with higher levels of medication
adherence [16].
Digital health technologies extend the scope of the health-care team by including
in the clinical armamentarium mobile/smartphone apps, digital medicine, adhesive
patches paired with mobile devices, and electronic pill containers. The evidence
base for using digital health technologies for schizophrenia treatment is quite small
but growing. Batra and colleagues (2017), in a systematic review, identified only
three trials that tested a digital health technology for the purpose of improving
adherence among patients with schizophrenia and reported outcomes data [17].
One trial, a three-arm randomized trial, compared an electronic medication mon-
itor versus in-person interventions to improve adherence versus treatment as usual.
The electronic medication monitor group (n = 48) received a device that was capa-
ble of cuing the taking of medication, warning patients when they were taking the
wrong medication, recording side effect complaints, and alerting treatment staff of
failures to take medication as prescribed (staff could then follow up with the patient
by telephone when adherence problems were identified). The in-person intervention
(n = 47) involved weekly home visits by a clinician utilizing cognitive adaptation
training – a manual-driven intervention – to provide adherence supports (e.g., cal-
endars, alarms, signs, labels, pill containers, checklists, or notebooks to record
questions). The treatment as usual group (n = 47) received case management and
psychiatry appointments at a clinic. After 9 months, medication adherence was bet-
ter in the electronic medication monitor group (91%) and the in-person intervention
group (90%) compared with the treatment as usual group (72%). Average treatment
cost was less for the electronic medication monitor group ($130 per month) than the
in-person intervention ($180 per month) [18].
A different application of technology was studied by Kane and colleagues (2013).
Researchers enrolled 28 adult outpatients (n = 16 with schizophrenia, n = 12 with
bipolar disorder) to test the feasibility of a networked digital health feedback system
that electronically confirmed ingestion of oral medications by using an ingestion sen-
sor. The small sensor (1 × 1 mm) was embedded in a tablet, was activated by gastric
fluid, and transmitted a signal to a wearable device that logged the date and time the
pill was ingested. Providers could view ingestion data remotely on a computer. The
mean adherence rate during the study was 74%, no subjects developed new onset of
paranoia related to using the device, and 89% thought the device could be useful to
them [19]. Peters-Strickland and colleagues followed with a study of aripiprazole tab-
lets embedded with this sensor technology and enrolled 67 adults with schizophrenia.
They estimated the mean adherence was 74% of prescribed doses. A high proportion
of patients were able to use the device and reported satisfaction with it [20]. In
November 2017 the Food and Drug Administration approved the sensor technology
paired with aripiprazole (marketed as Abilify MyCite); however the product labeling
notes that the ability to improve patient adherence has not been shown [21].
Condition-Related Interventions
Naturally, the World Health Organization recommends that if disease symptoms or

comorbidities are interfering with treatment adherence, clinicians should identify
and treat those symptoms and comorbidities [11]. This is difficult to do when
patients are not adherent to treatment.
For patients who attend clinical appointments, a conversation about medication

adherence might be a starting point. Osterberg and Blaschke (2005) warn that gen-
erating honest dialogue about medication adherence can be challenging, since
patients generally want to please their physicians and may feel tempted to report
what they think the physician wants to hear. Framing the conversation in a straight-
forward, reassuring, and nonjudgmental way might help patients to be more open
about nonadherence. For instance a physician might say, “I know it must be difficult
to take all your medications regularly. How often do you miss taking them?” Patients
can also be asked whether they are having side effects, whether they know why they
are taking their medications, and what the benefits of taking them are [6]. If the
dialogue creates opportunities to talk about symptoms and to offer treatment for
those symptoms, then a pathway forward has been discovered.
When a lack of insight is contributing to treatment nonadherence, some psycho-
therapies have been associated with improvements in insight. Cognitive behavior
therapy for psychosis, cognitive therapy following cognitive remediation, motiva-
tional interviewing, mindfulness meditation, and metacognitive training have each
been shown to improve levels of insight. Antipsychotic medications, especially clo-
zapine, are also associated with improved insight [14]. These tools are only useable
if the patient attends appointments.
Involuntary hospitalization and treatment over objection represent the final
recourse when symptoms are interfering with a person’s ability to engage in treat-
ment. This pathway is only feasible in select circumstances, usually when a person
is dangerous to self or others or is unable to function. While this might temporarily
break the cycle and engage the person in treatment, it does not appear to have a
long-term benefit for treatment adherence. In a 2-year study of voluntarily (n = 290)
and involuntarily (n = 84) hospitalized patients with schizophrenia or schizoaffec-
tive disorder, having an involuntary index hospitalization was not associated with
subsequently developing treatment engagement or medication adherence judged by
blood levels, after controlling for sociodemographic variables and clinical history.
Involuntary index hospitalization was associated with continuously lower self-rated
medication adherence [22].
Therapy-Related Interventions
The World Health Organization proposed that simplifying the dose frequency and
minimizing side effects were the two main therapy-related interventions that could
improve treatment adherence [11]. The schizophrenia literature echoes these con-
cerns but has sometimes yielded counterintuitive empirical findings.
Concerns about optimizing antipsychotic medication selection and minimizing
adverse effects are common in the schizophrenia treatment adherence literature. In
a national survey in the United States (n = 876 persons taking a medication for
schizophrenia), a variety of side effects were reported as contributing to medication
nonadherence in logistic regression models: agitation, nausea/vomiting, restless-
ness or feeling jittery, decreased interest in sex and sexual dysfunction, difficult or
painful menstrual periods, difficulty thinking or concentrating, sedation, insomnia,

dizziness, and weight gain. Importantly though, the data are from a convenience
sample, casting doubt on whether these results are representative of all patients with
schizophrenia [23].
Curiously though, the vast majority of studies examining this issue have not
found a specific association between medication selection, side effect severity, and
medication adherence in schizophrenia. For example, an analysis that combined
CATIE (Clinical Antipsychotic Trials of Intervention Effectiveness) and EUFEST
(European First Episode Schizophrenia Trial) data found that medication adherence
at 6 months was not associated with akathisia, Parkinsonism, or dyskinesia [24].
The current data suggest there is not one medication or one side effect profile that
drives medication adherence or nonadherence at the population level. Nevertheless,
medication selection that is tailored to an individual patient’s needs and preferences
is likely to foster better adherence.
When efforts to simplify dosing schedules are considered, long-acting injectable
medications arguably represent the simplest of dosing schedules. For patients who
have a difficult time taking a pill once or multiple times each day, it may be easier
for these patients to receive an injection once or twice a month. This eliminates any
uncertainty about whether the patient is receiving the prescribed antipsychotic, yet
potential drawbacks exist also: pain at the injection site, medication cannot be
quickly stopped if there are adverse effects, some formulations are expensive or dif-
ficult to obtain in the community, and injections may carry more stigma.
Curiously, randomized controlled trials have generally not shown superiority of
long-acting injectable medications over oral medications. A meta-analysis of 21
randomized controlled trials involving 5176 persons with schizophrenia and multi-
ple antipsychotics (pooled) compared long-acting injectable versus oral medication.
Long-acting injectable medication was not superior to oral antipsychotic medica-
tion on any of the outcomes: relapse rate, all-cause discontinuation, discontinuation
due to adverse events, drug inefficacy, hospitalization, and nonadherence [25].
However, real-world effectiveness data does suggest that long-acting injectable
antipsychotics are superior to oral medications. In Sweden, researchers reviewed a
nationwide registry of all patients with schizophrenia diagnosed between 2006 and
2013 and obtained treatment information from a central drug registry. The primary
outcomes were psychiatric rehospitalization and treatment failure (rehospitalization
for suicide attempts, medication discontinuation or switching to another antipsy-
chotic, or death). Rehospitalization rates were lowest among patients receiving clo-
zapine (HR 0.53) or once monthly long-acting injectable antipsychotics (paliperidone
(HR 0.51), zuclopenthixol (HR 0.53), perphenazine (HR 0.58), or olanzapine (HR
0.58)). Similarly, treatment failure rates were lowest for clozapine (HR 0.58) and all
long-acting injectable antipsychotics (HR 0.65–0.80). The authors estimated that
the risk of rehospitalization was 22% lower during treatment with a long-acting
injectable medication compared with the equivalent oral formulation [9].
In both studies the authors propose that long-acting injectable medications are
probably superior to oral antipsychotics in real-world populations, even though this
difference is not observed in randomized controlled trials. The authors suggest that
randomized controlled trials obscure this difference because enrollment criteria

skew the sample toward persons with better engagement with mental health-care
providers, better adherence to the treatment, or lower illness severity [9, 25].
Patient-Related Interventions
Providing patients with information and education is important, yet the World
Health Organization advised that education alone is a weak intervention. Rather,
patients need to be informed, motivated, and skilled if they are to adhere to a long-
term treatment regimen [11]. Several interventions targeting the individual patient’s
thoughts and motives have been tried, with mixed success.
Motivational interviewing is a client-centered, directive method for enhancing a
person’s intrinsic motivation to change, by exploring and resolving ambivalence. It
has been integrated into compliance therapy and adherence therapy, which have
been studied in clinical trials among persons with schizophrenia.
In Amsterdam, a randomized clinical trial utilized motivational interviewing
among multi-episode schizophrenia spectrum patients who were hospitalized or
unstable due to medication nonadherence. Participants were offered eight sessions
of either motivational interviewing (n = 45 study completers) or health education
(n = 51 study completers). At follow-up assessments (immediately after completing
therapy and 6 months later), there was no difference in medication adherence or
attitudes toward medication. The results did suggest that subgroups might benefit
from motivational interviewing, especially females, non-cannabis users, younger
patients, and those with shorter illness duration [26].
Compliance therapy (a brief, cognitively based psychosocial adherence interven-
tion) was delivered to outpatients in Texas (n = 30 participants with schizophrenia
or schizoaffective disorder). The four to six therapy sessions focused on the patient’s
illness and treatment history, beliefs and understanding of the illness, and ambiva-
lence toward treatments and stigma. At 6-month follow-up, there was no measur-
able benefit of compliance therapy for medication adherence. Patients’ symptoms,
level of insight, and attitudes toward medication treatment also did not change [27].
A randomized controlled trial in Hong Kong (n = 110 study completers) reported
that an eight session course of adherence therapy was associated with improvements
in medication adherence, insight into the illness or treatment, psychosocial func-
tioning, symptom severity, and the number of rehospitalizations at 6-month follow-
up. While the results are promising, limitations also exist, namely, that the study
design did not control for the frequency of home visits, the number of hours spent
receiving home visits, or the fact that patients in the study knew whether they had
received adherence therapy or treatment as usual [28].
Cognitive behavior therapy has also been studied. Researchers in Germany
enrolled psychiatric inpatients with schizophrenia and related disorders and ran-
domized them to receive either cognitive behavior therapy or psychoeducation
(n = 88 participants). Cognitive behavior therapy was delivered in a group format,
included 16 sessions over 8 weeks, and focused on auditory hallucinations and
delusions, associated symptoms and problems (e.g., anxiety and depression), relapse
prevention and associated problems, and medication adherence. Psychoeducation
was also delivered in a group format, included eight sessions over 8 weeks, and
covered symptoms of psychosis, models of psychosis, effects and side effects of
medication, maintenance medication, early symptoms of relapse, and relapse pre-
vention. Both interventions included elements of motivational interviewing.
At both 6-month and 24-month follow-up, there was no significant difference in
medication adherence, medication types, or medication doses. At 6-month follow-
up, the group that received cognitive behavior therapy had lower rehospitalization
rates, but this difference was no longer significant at 24-month follow-up [29, 30].
Another strategy, the use of financial incentives, is hardly a traditional psycho-
therapy, but like the psychotherapies, it seeks to shift an individual’s internal moti-
vations toward adherence. Rather than utilizing cognitive strategies and emotional
support, it offers small financial rewards to make the treatment benefits more
immediately salient. In the Netherlands, outpatients (n = 169 with a psychotic dis-
order) who were prescribed depot antipsychotics were randomized to receive treat-
ment as usual or 12 months of a financial reward accompanying each dose of their
depot antipsychotic (maximum reward was 30 euros per month). Adherence was
calculated using the number of doses received divided by the number of doses
prescribed. After 12 months the intervention group had a higher adherence rate
than the treatment as usual group (92.7% versus 77.0%). The longest uninterrupted
period during which depots were received was almost 100 days longer for patients
in the intervention group. Moreover the time to discontinuation was significantly
improved in the intervention group (median 365 days) compared with those in the
control group (median 134 days). Patients’ attitudes toward medication at the end
of the 12-month study period did not differ significantly from their attitudes at
baseline [31].
Disappointingly, at 12-month follow-up, the two groups did not differ in their
symptom levels, the number of patients admitted to the hospital, lengths of hospital
stays, rates of problematic alcohol or drug use, subjective quality of life ratings, or
differences in psychosocial functioning [31]. While the financial incentives
improved adherence numbers, there seemed to be little impact on patients’ clinical
course.
Conclusion
Treatment nonadherence remains a major challenge when treating persons with

schizophrenia. Even though antipsychotic medication is likely to improve the clini-
cal course for many patients, approximately half of patients do not remain adherent
to prescribed medications. The strongest evidence suggests that assertive commu-
nity treatment, monthly long-acting injectable antipsychotic medication, and per-
haps financial incentives can improve medication adherence.
No single intervention is likely to resolve the problem of treatment nonadher-
ence, because nonadherence has many factors. The World Health Organization’s list
of factors (socioeconomic factors, health-care team- and system-related factors,

condition-related factors, therapy-related factors, patient-related factors) offers a
useful paradigm but is not an exhaustive list. Moreover schizophrenia treatment is
multifactorial, so reducing treatment adherence to medication adherence risks dis-
torting the topic.
Questions about treatment engagement, retention rates, and medication adher-
ence will always be subservient to larger questions about patient outcomes. There is
an ongoing need to develop evidenced-based interventions that help persons with
schizophrenia to live safe, engaged, and meaningful lives. Helping patients to
adhere to those treatments may lead to progress.
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Increasing Psychiatric Treatment
Engagement and Adherence 5
in the College Population
Althea Bardin, Brianna Cheney, and Laura Braider
Introduction
While the college years are often touted as the best years of a person’s life, they are
also a time of transition to adulthood and a peak period for the emergence of mental
illness. Young adulthood is characterized as a time of opportunity for growth in
personal, academic, career, and social endeavors. This is an exciting time, but it is
also one marked by challenges – such as navigating the new college environment,
adjusting to independent living, managing the academic rigor of college, living with
new people, and sometimes exploring individual values that may not be in line with
one’s parents’ values. Furthermore, this transition comes at a time when students’
prefrontal cortices have not yet fully matured and, consequently, executive function-
ing abilities are still developing [1, 2]. This may limit students’ capacities to manage
these stressors. These challenges can precipitate the onset or reoccurrence of psy-
chiatric disorders [3]. The number of college students struggling with mental illness
has been rising steadily, and there is now considered to be a mental health crisis on
college campuses [4–6].
The Current State of Mental Health on College Campuses
The current state of mental health on college campuses is alarming with university
student counseling centers reporting that students are more frequently arriving on
A. Bardin (*) · B. Cheney

e-mail: abardi2@pride.hofstra.edu
L. Braider
Northwell Health’s Behavioral Health College Partnership, Zucker School of Medicine
at Hofstra/Northwell Ambulatory Psychiatry Center, Glen Oaks, NY, USA

https://doi.org/10.1007/978-3-030-12665-0_5
60 A. Bardin et al.
campus with severe mental health conditions and already on prescribed psychiatric
medications [7]. According to the 2017 American College Health Association
National College Health Assessment, 16.7% of students reported having been
diagnosed with depression and 20.6% with anxiety [8]. In addition, the report
states that 0.4% of college students surveyed reported having a diagnosis of schizo-
phrenia [8]. Blanco and colleagues (2008) found that nearly 18% of college stu-
dents had been diagnosed with a personality disorder [3]. Acute psychiatric
diagnoses, such as psychosis, appear to be relatively less prevalent. However, it
appears that rates of more severe psychiatric disorders are also increasing. In a
study examining the characteristics of college students hospitalized due to mental
health issues between 2010 and 2014, Braider and colleagues (2018) noted that a
greater proportion of college student hospitalizations were attributable to major
psychiatric disorders than in 1992 [9, 10]. In addition to reporting higher rates of
psychiatric disorders, students are reporting greater psychological distress with
30% endorsing that they “felt so depressed it was difficult to function” within the
past year, 44% endorsing feeling hopeless in the past year, over 10% reporting hav-
ing seriously considering suicide in the past year, and 1.5% reporting that they
actually attempted suicide in the past year [8].
Furthermore, data suggest that the majority of psychiatric issues among college
students go untreated. Blanco and colleagues (2008) found that only 34.11% of col-
lege students diagnosed with a mood disorder, 15.93% diagnosed with an anxiety
disorder, and 5.36% diagnosed with an alcohol or substance use disorder had
received treatment in the prior year [3]. Although suicide is currently the second
leading cause of death among college-aged students [11], unfortunately, 80% of the
students who died by suicide never utilized their university counseling services
[12]. Psychiatric disorders are the fastest-growing area of disability in college stu-
dents [13, 14], and college represents a tremendous opportunity to reach this popu-
lation in a specific and somewhat controlled setting.
osts of Nonengagement and Nonadherence

C
in the College Population
Mental health treatment nonengagement and nonadherence in college students have

been shown to have significant costs on both the individual and societal levels.
Early-onset mental health disorders have been associated with lifelong adverse
impacts on individuals’ educational attainment, financial and social functioning,
and physical health [15–17]. Untreated mental health issues have been shown to
have particularly adverse effects on outcomes for college students. In a longitudinal
study, Eisenberg et al. (2009) found that depressive symptoms predict lower GPA
and higher dropout rates for college students, and this effect was found to be even
stronger for students with co-occurring depression and anxiety [18]. This same
study found that eating disorder symptoms were predictive of lower GPA [18]. The
authors speculate that, in addition to costs subsumed by individual college students,
5 Increasing Psychiatric Treatment Engagement and Adherence in the College… 61
untreated mental health issues likely lead to significant economic burden for aca-
demic institutions due to costs associated with premature dropouts and unrealized
tuition. Students with untreated mental health issues may also negatively impact
others on campus, such as roommates, faculty, and staff, through disruptive or
upsetting behavior exhibited on campus [19]; however, this impact has not yet been
explored empirically.
Importantly, even once engaged with mental health treatment, college stu-
dents tend to have relatively low rates of follow-up and high rates of nonadher-
ence [20, 21], which may limit the outcomes of treatment. For example, early
dropout from outpatient psychotherapy has been associated with poorer treat-
ment response and higher posttreatment distress in both child and adult popula-
tions [22]. Likewise, in the general adult population, receiving inadequate
treatment for depression has been associated with higher risk of relapse, higher
disability, and higher risk for suicide [23]. Given that a majority of lifetime men-
tal health disorders present by young adulthood [24], college appears to be a
particularly critical time period for effectively identifying and treating mental
health disorders [25].
Definition, Measures, and Rates of Nonadherence
Definition of Treatment Adherence
Treatment adherence has been defined as “The extent to which a person’s b ehavior-
taking medication, following a diet, and/or executing lifestyle changes- corresponds
with agreed recommendations from a health care provider” [26] (p.3). “Adherence”
is currently preferred over the similar term “compliance” because it implies a more
active role for the patient. While compliance suggests the patient has followed a
provider’s orders, adherence suggests the patient has stuck to a plan the he or she
agreed upon with the provider [26, 27]. Factors that contribute to therapeutic non-
adherence have been grouped into five categories: patient-centered factors, therapy-
related factors, social and economic factors, healthcare system factors, and disease
factors [26, 28].
Measurement of Treatment Adherence
Though nonadherence has long been recognized as significant concern, providers

and researchers have found it difficult to measure. While many measurement strate-
gies exist, all have their drawbacks, and none has been accepted as a gold standard
[26, 27, 29]. A 2007 NIMH panel of treatment adherence researchers recommended
utilizing multiple measurement methods whenever feasible [30]. In mental health
treatment, adherence to both medication and psychotherapy regimens must be
considered.
62 A. Bardin et al.
Adherence with prescribed medication regimens may be monitored via direct

observation, patient self-report, counting pills, tracking prescription refills, measure-
ment of the drug in blood or urine, use of electronic medication monitors, and imbed-
ding pills with ingestion sensors [26, 27, 31, 32]). Additionally, multiple questionnaires
exist which measure factors that may affect adherence (e.g., attitudes toward medica-
tion, side effects) [26, 27]. A review of the merits and drawbacks of current measures
of adherence is beyond the scope of this chapter. Jin and colleagues (2008) report that
adherence to a medication regimen is generally considered adequate if a patient takes
80–120% of prescribed medication [28], though Sabaté (2003) astutely notes that
given differences in dose-response curves between medications, it is difficult to iden-
tify a single cutoff point for adequate adherence [26]. In addition to quantity of medi-
cation taken, dosage schedules must be considered in determining adherence.
Increasing or decreasing the frequency of doses and taking the medication at the
incorrect time of day are both types of nonadherence [28].
Regarding psychotherapy, completion of full course of treatment (versus prema-
ture attrition) and follow-up on referrals may be used as a measure of adherence [33,
34]. Quantity and quality of between-session homework assignments may also pro-
vide insight into a patient’s adherence level [35–39]. Empirical exploration of what
constitutes an “adequate” level of psychotherapy adherence is needed. Logically,
one might expect that the level of adherence required to achieve positive clinical
outcomes varies according to factors such as type and severity of presenting prob-
lem and type of psychotherapeutic intervention.
Rates of Mental Health Treatment Adherence in Emerging Adults
Significant data suggest emerging adults are less likely to receive mental healthcare
than adolescents and older adults. Copeland and colleagues (2015) analyzed data
from the National Comorbidity Survey, the National Comorbidity Survey
Replication, and National Comorbidity Study-Adolescent and a study of the
National Epidemiologic Survey of Alcohol and Related Conditions (NESARC) and
found that taken together, these studies suggest that young adults in their late teens
and earlier 20s utilize mental health services at significantly lower rates than adoles-
cents and those in their late 20s [40]. Similarly Olfson and colleagues (2002) found
that 18–24-year olds in two large, nationally representative samples sought psycho-
therapy at lower rates than 13–17-year-olds and 25–34-year-olds [41]. In a prospec-
tive study that assessed participants at multiple points in both adolescence and early
adulthood, Copeland et al. (2015) found 50.9% of psychiatric disorders were asso-
ciated with at least some treatment in adolescence, while only 28.9% of psychiatric
disorders were at least partially treated in early adulthood [40]. Klein and colleagues
(2011) found that only 35.7% of college students identified as having untreated
depression during primary care appointments followed-up on referrals for psycho-
logical services within 30 days [34]. Although the 2016 Association for University
and College Counseling Center Directors’ Annual Survey reports that college
students do attend the majority of therapy appointments they schedule (79% of indi-
vidual therapy appointments, 75.6% of group therapy appointments) [42], data sug-
gest that emerging adults are more likely to drop out of mental health treatment
prematurely than other age groups [20, 21]. The Center for Collegiate Mental Health
2017 Annual Report [43] provided data on reasons for treatment termination for
161,014 unique college students seeking treatment at 147 university counseling
centers. Nonadherence was suggested in roughly one third of cases; 32.8% of cases
were classified “client did not return (no-show, cancellation, no response, etc.)”; and
1.7% of cases were classified as “termination against provider recommendations.”
In contrast, high levels of adherence were suggested in 39.4% of cases (19.9% ter-
minated by client/provider mutual agreement and 19.5% terminated because treat-
ment goals were completed). The remainder of cases was terminated for reasons
that left adherence level unclear (e.g., “end of academic term” or “graduation”).
A literature review returned little information on psychiatric medication adher-
ence among emerging adults and college students. McCabe and colleagues (2006)
found comparable rates of medical and illicit use for some psychiatric medications
among undergraduate students [44]. Stimulants for ADHD were found to be most
frequently abused; 2.2% of participants used them medically, while 5.4% used them
illicitly, with 54% of participants prescribed with stimulants reporting they were
approached to divert their medications. Sedatives and anxiolytics were the second-
most frequently abused; 3.4% of participants used them medically, while 2.9% used
them illicitly, with 19% of participants prescribed them reporting they were
approached to divert them. This suggests that nonadherence to treatment includes
not only failing to take prescribed medication but also taking medication without
the supervision of a mental healthcare professional.
While engagement and attrition rates provide some insight into the treatment
adherence of emerging adults with mental illness, by no means do they paint a full
picture. Notably missing from the review above is comprehensive data regarding
medication adherence, completion of psychotherapy homework assignments,
adherence to lifestyle changes recommended by mental health professionals,
follow-through on referrals (e.g., to specialists, psychiatrists, or nonuniversity pro-
viders for continued treatment during school breaks or once counseling center ses-
sion limits have been reached), and follow-through on recommendations (e.g.,
medical withdrawal, reduced course load, registration with university disability
agency services to allow for accommodations). Although college students often
participate in university subject pools, leading them to be well-represented in
research on basic psychology, comparatively little clinical research has been done
in college counseling centers. In community settings, patients are generally
grouped into “adolescents” and “adults.” The relative dearth of information regard-
ing adherence rates of emerging adults suggests an area for future study. However,
the current data showing low rates of engagement and high rates of attrition, high
rates of mental illness, and high costs of untreated and undertreated mental illness
in this age group suggest that mental health treatment nonadherence in emerging
adults is a relevant issue now.
64 A. Bardin et al.
Barriers to Adherence and Recommendations for Intervention
Over the past decade, significant advances have been made in identifying the barri-
ers to college students seeking out and adhering to formal mental health treatment.
We discuss these findings using the multidimensional framework for treatment non-
adherence outlined by the World Health Organization [26]. Recommendations for
overcoming these barriers are discussed.
Patient-Related Barriers
Perceptions that formal treatment is not needed and preferences for self-management
of problems appear to prevent college students from both seeking out and adhering
to mental health treatments. Czyz and colleagues (2013) found that among college
students who were at elevated risk for suicide and who had not sought treatment,
more than half of students (66%) cited a belief that their problem was either not sig-
nificant enough to require treatment or was temporary in nature and would resolve
without treatment [45]. In this same study, believing that problems could be managed
independently with self-help methods was identified as a reason for not seeking pro-
fessional help among 18% of college students [45]. Misaligned expectations of “nec-
essary” mental health treatment between college students and providers may serve as
an additional barrier to adherence. In a study of adult therapy outpatients, Pekarik
and Wierzbicki (1986) found significant discrepancies between the number of treat-
ment sessions expected by therapists and by clients, and, importantly, clients’
expected number of treatment sessions significantly predicted the number of sessions
that clients actually attended [46]. Given that college students may be at risk for
underestimating the need for mental health intervention and may be receiving mental
health treatment for the first time, it may be of heightened importance to outline
recommended treatment duration and rationale at the outset of treatment.
Additionally, stigma around utilizing mental health services and discomfort with
confiding mental health information to treatment providers has consistently been
cited as a significant barrier to college students seeking formal mental health treat-
ment [25, 45]. Eisenberg and colleagues (2009) found that college students’ per-
sonal stigma (i.e., their personal negative attitudes and prejudices related to mental
illness) was negatively related to help-seeking tendencies and found rates of per-
sonal stigma to be highest among students who were male, younger, Asian, interna-
tional, religious, or from lower-income families [25]. In addition, family attitudes
toward mental health treatment may serve as a related barrier to treatment engage-
ment and adherence given the continued emotional and financial reliance of college
students on family during the young adulthood developmental period. College stu-
dents may fear disappointing family by requiring mental health treatment and may
fear parents finding out about their treatment utilization, particularly if they are
covered by their parents’ insurance [47].
The healthcare transition (HCT) from child- to adult-centered care has been
associated with markedly decreased medical treatment adherence across medical
care services and across treatment domains, including appointment attendance,

medication adherence, and other illness-specific tasks [48]. Nonadherence issues
related to the HCT do not fit neatly into the World Health Organization’s categories
of nonadherence factors [26] but instead reflect a complex intersection of develop-
mental, family, and system factors [48]. The transition from child to adult mental
health services has been identified as a period when many late adolescents and
young adults are at risk for disengaging from mental health treatment due to the
logistical challenges associated with the transition [49, 50]. This transition is par-
ticularly relevant to mental health treatment adherence issues in the college popula-
tion, given that college students seeking mental health treatment are often managing
their healthcare independently for the first time and may be transitioning from pedi-
atric to adult-centered mental health providers or to new providers located in prox-
imity to their college campus.
With regard to developmental considerations, the transition from child- to adult-
centered care requires late adolescents and young adults to become more indepen-
dent managers of their treatment at a time when their cognitive capacities may not
yet be fully developed [51]. Pre-cortical brain development, which is responsible
for the executive functioning abilities required to effectively organize, plan, antici-
pate consequences of decisions, and to regulate emotion, appears to be in continu-
ous progress through late adolescence and is not complete until the early to mid-20s
[1, 2]. Decreased family support in navigating healthcare during the transition to
college has been discussed as an additional factor impacting mental health treat-
ment adherence in college students [47], but its impact has not yet been empirically
explored. Of note, in adolescent medical samples, parental involvement has been
found to predict greater pediatric medical treatment adherence, while miscommuni-
cation between parents and children regarding responsibility for aspects of chil-
dren’s treatment has been found to predict poorer adherence [52]. Importantly, the
literature on the HCT underscores that adult health systems expect that, at age 18,
late adolescents and young adults will be able to independently manage their care;
however, this expectation may be unrealistic in the context of research demonstrat-
ing that mature adulthood is not achieved until young adults have reached their 20s
[50]. Changes aimed at providing college students with additional support in man-
aging mental healthcare may be needed to increase mental health treatment adher-
ence in the college population.
Patient-Related Recommendations
Brief screening measures can identify students who may benefit from professional
services, given many college students believe their difficulties are not significant
enough to warrant professional treatment [45]; screening measures may be useful in
providing students with objective feedback on their symptom levels and educating
them as to when treatment may be appropriate. Campus primary healthcare clinics
have been identified as an ideal setting for such screenings, given these clinics inter-
face with a much larger percentage of students than counseling centers [33, 34].
66 A. Bardin et al.
Chung and colleagues (2011) found that 60–85% of students were seen annually by
campus primary healthcare clinics, while only 5–15% of students were seen by campus
counseling centers each year [33]. The authors emphasize that when primary health-
care clinics provide such screenings, it is imperative that they have efficient referral
protocols to ensure that students who screen positive for mental health concerns have
the option to receive follow-up evaluation and treatment in a timely fashion.
Compared to other age groups, emerging adults are at increased risk of prema-
ture attrition from mental health treatment [20, 21]. Strategies to address this prob-
lem are still in developmental stages. Mistler and colleagues (2016) have completed
a small feasibility trial of motivational enhancement therapy for treatment attrition,
a brief adjunctive intervention that can be utilized at the beginning of treatment for
any mental health concern to mitigate the risk of premature attrition [53]. Importantly,
previous versions of motivation enhancement therapy have been tested with emerg-
ing adults with specific diagnoses, providing evidence that motivational enhance-
ment therapy is developmentally appropriate for this age group [54, 55]. In reporting
on a pilot project to improve the quality of depression care at colleges, Chung
(2011) noted the importance of “proactive follow-up” and redesigning systems to be
“as barrier-free as possible for patient engagement” (p. 630) [33].
Given many college students are still developing cognitively and are navigating
the healthcare system independently for the first time, they may benefit from clinic
systems designed specifically to facilitate engagement. For example, counseling
centers might ensure their websites are easily located via internet search, allowing
students to quickly obtain contact information 24 h per day. Chung (2011) found
preliminary evidence that having a small number of staff members with the primary
responsibility of reaching out to students who missed appointments increased
patient follow-up [33]. Providers might recommend that parents help prepare their
students to navigate the system independently by encouraging them to begin mak-
ing their own appointments and filling their own prescriptions during senior year of
high school.
Treatment-Related Barriers
Treatment-related factors contributing to mental health treatment nonadherence in

the college population have been less thoroughly investigated. One treatment-
related factor that appears to interfere with treatment adherence is the time required
to receive treatment. Lack of time was cited as a barrier to seeking formal mental
health treatment by nearly a third of undergraduate nontreatment seekers at elevated
risk for suicide [45] and nearly half of depressed, nontreatment-seeking medical
students [56]. The time requirement for treatment likely serves as a salient barrier
for students to engage in evidence-based psychotherapy, which typically requires at
least one 45-min to 1-h commitment on a weekly basis for several consistent weeks.
Time requirements may increase if the student is referred off campus for treatment.
This may occur if the student has reached the maximum number of sessions allowed
by the counseling center or has a diagnosis that warrants specialized care. For the
2016–2017 school year, 34.9% of college campuses had no psychiatric appoint-

ments available on campus, requiring any student needing psychiatric medication to
go off campus [57]. For students who do not have cars on campus, the time spent
commuting to off-campus treatment may be even more significant and may serve as
an additional barrier.
College students may be particularly sensitive to the adverse side effects of psy-
chotropic medications such as weight gain, sexual functioning, and ability to safely
tolerate alcohol. In a study of patients with first-episode psychosis, a majority of
patients (86%) who perceived themselves to be overweight attributed their weight
gain to antipsychotic medication, and, of these patients, nearly three-quarters (72%)
reported stopping or reducing their antipsychotic dosages in order to lose weight
[29]. Similar research examining the impact of psychotropic medication attitudes
on adherence in the college population is sorely needed.
Treatment-Related Recommendations
Lack of time has been identified as a barrier to mental health treatment engagement
by college students. This is a complex factor, with many possible causes. Newer
students may need to learn to manage their time and/or expectations. They may take
too heavy a course load, procrastinate at the beginning of the semester leading to a
crunch at the end, or have their hearts set on having both exceedingly high grades
and a thriving social life. In these cases, outreach initiatives and proactive outreach
or brief interventions aimed at helping students develop healthy routines (e.g., eat-
ing and sleeping regularly), allocate time for chores and errands (e.g., laundry, pick-
ing up prescriptions), and learn strategies for balancing work and self-care may be
effective not only in helping the student carve out time for treatment but also in
decreasing distress. Motivational strategies might also be employed to help the stu-
dent recognize the risks of not seeking treatment (e.g., increased depression leads to
more time spent crying and sleeping and less time for studying).
For other students, a particularly time-intensive major or extracurricular activity
(e.g., division 1 athletic team) may limit time available for treatment. Still others
may need to work multiple jobs to afford college or may have time-consuming fam-
ily obligations (e.g., caring for a family member). Technology may provide a partial
solution to this problem; treatment provided via computer or smartphone may pro-
vide increased flexibility in scheduling. Students may be able to complete sessions
late at night or early in the morning to prevent conflicts with academic and extracur-
ricular obligations. Additionally, online programs save the student the time required
to get to and from the treatment center. While this might be a negligible time savings
for a residential underclassman seeking treatment at the campus counseling center,
it could become significant for an education major involved in student teaching at
an off-campus elementary school, a student with an off-campus job, or a student
who has been referred for off-campus treatment.
Treatments delivered via technology generally fall into three groups: apps, com-
puterized therapy programs, and telemedicine. Mental health apps are plentiful,
68 A. Bardin et al.
inexpensive, and easily accessible, but quality varies dramatically [58]. They offer
several advantages that may increase engagement and adherence among college
students. They allow users to be anonymous and thus may be attractive to students
who fear stigma. From a developmental perspective, emerging adults who are man-
aging their healthcare for the first time may find downloading an app to be more
familiar (and less anxiety producing) than calling a clinic to schedule an appoint-
ment. Additionally, it has been suggested that emerging adults have a preference for
self-reliance in managing with mental health issues [59], thus apps may provide
appeal as they allow the young adult to independently select the “treatment” from a
broad menu of options. At present, few mental health apps have been studied in a
controlled manner [58]. In addition, mental health apps provide their own adherence
challenges. One study that examined data on 12 mental health apps in the first year
they were publically available reported 10,131 downloads by 5,210 unique indi-
viduals (some people downloaded multiple apps), but for all 12 apps, the modal
number of launches per user was just one [60]. The percentage of users who used an
app for ten sessions or more ranged from 4.69% for the least utilized app to 35.70%
for the most utilized app [60]. Mean length of time between first app usage and last
app usage ranged from 12.96 days for the app used for the shortest duration to
25.33 days for the app used longest, and percent of users still using the app after
28 days ranged from 12.02% for the app that retained the smallest percentage of
users to 23.30% for the app that retained the most [60]. This all suggests that many
people who download apps may not continue to use them regularly for long.
Web-based or computer-delivered interventions are full treatment programs
that may be delivered online, or via a downloaded program, CD-ROM, or flash
drive. The treatment may be provided via computer alone, or the patient may
have some interaction with a live person in the form of administrative/technical
support or reminders to participate. A meta-analysis that examined such inter-
ventions in university students found that when compared to inactive controls,
the computerized interventions were effective in decreasing anxiety and decreas-
ing depression [61]. In one study of CBT for social phobia, a version of the
intervention delivered entirely online had similar results to a version delivered
face-to-face, though both groups had high attrition rates [62]. Another study
examining interventions for depression and anxiety in 1st year undergraduates
compared four conditions: online CBT, face-to-face CBT, combined online and
face-to-face CBT, and no-treatment control. Combined online and face-to-face
CBT was found to be most effective, followed by face-to-face CBT and then
online CBT [63]. However, it is notable that the online CBT significantly outper-
formed the no-treatment control, suggesting it is a viable option for students who
cannot access in-person treatment [63]. Like apps, web-based or computer-deliv-
ered interventions may appeal to students who fear stigma or who have prefer-
ence for autonomy and self-management of care. Also like apps, web-based and
computer-delivered interventions may come with their own adherence chal-
lenges. Christensen et al. found that of 38,791 members of the public who signed
up for an online CBT program, less than 7% progressed beyond the second of
five modules [64].
Telemedicine involves utilizing secure videoconferencing software to allow a

clinician to meet with a patient in real time, over the Internet. One rural university
reported using this strategy to provide its students access to psychiatry services at a
residents’ clinic some distance away [65]. Williams et al. (2014) found that 88.2%
of college students who screened positive for depression and completed a psychia-
try consultation via Skype felt psychologists and psychiatrists could effectively pro-
vide services using videoconferencing technology, though these results should be
interpreted with caution given only a small fraction of the students who screened
positive for depression chose to complete the Skype psychiatry consultation [66].
Telemedicine could allow students whose needs exceed the counseling center’s ser-
vices to receive specialized care in their dorm rooms. This could promote adherence
to recommendations for continued or specialized care by eliminating the barrier of
transportation for students who do not have cars on campus and or live in college
towns that lack extensive public transportation systems. Additionally, given many
mental health providers do not take insurance, telemedicine could enable students
to connect with geographically distant providers who do take their insurance plan,
mitigating financial barriers to adherence. Telemedicine could also increase conti-
nuity of care, potentially allowing students to continue seeing the same providers
year-round despite moves between their hometown and college town. A positive/
supportive/trusting patient-provider relationship has been consistently associated
with increased medication adherence [67–69], suggesting students may be more
likely to adhere to the recommendations of a treatment provider they have had time
to foster a relationship with. Likewise, they may be more likely to continue with
services they have begun during the semester if they do not have to seek out a new
provider when they return home for the summer (or vice versa).
While technology offers exciting strategies to mitigate logistical barriers to men-
tal health treatment adherence in the college population, it is important to note the
field is young. Regarding telepsychiatry, systems of coverage have not kept pace
with rapidly evolving technology; thus services may not be covered by insurance.
While the research thus far has suggested technology has the potential to deliver
efficacious psychological treatments, in many studies participants have been given
incentives for participating in the research, either via course credit, payment, or
entry into raffles [61, 66]. Participation incentives might well affect adherence, with
participants being less likely to drop out when receiving some form of compensa-
tion. Thus, while some technology-based interventions have demonstrated efficacy
and can logically be expected to mitigate some barriers to student adherence to
traditional psychiatric services, further research is needed regarding levels of adher-
ence to interventions delivered via technology.
Technology may reduce logistical barriers to attending psychiatry appointments,
but once students attend appointments, they may be reluctant to adhere to the medi-
cation regimens prescribed. Many psychotropic medications have side effects which
may be particularly aversive to college students. Given that many college students
are still developing the brain areas necessary for effectively organizing, planning,
and anticipating consequences of decisions [1, 2], weighing the short- and long-
term pros and cons of nonadherence to medication may be challenging. This could
70 A. Bardin et al.
increase the likelihood of a student skipping doses on nights of parties involving

alcohol, self-discontinuing a medication that appears to be causing weight gain, or
opting to spend the day hanging out with friends instead of taking the campus shut-
tle to an off-campus pharmacy to get a prescription refilled. Higher patient partici-
pation in care has been associated with greater adherence to healthcare interventions
among college student-patients [70]; thus actively involving college students in
decisions regarding medication regimens when feasible may be beneficial.
Motivational interviewing strategies have been widely employed to target college
drinking and drug use [71–74]. Motivational interviewing strategies have also been
tested as a method to increase adherence to psychiatric medication regimens in non-
college populations, with positive results for antidepressants [75], encouraging pre-
liminary results for patients with bipolar disorder [76] and inconclusive results for
antipsychotics [77, 78]. Future research might investigate whether motivational
interviewing could be utilized to increase college student adherence to psychiatric
medication regimens.
Social and Economic Barriers
Research investigating associations between social and economic factors and treat-
ment engagement and adherence in the college population has found disparities
among racial and ethnic groups as well as among socioeconomic groups. College
students from racial or ethnic minority groups and from lower socioeconomic back-
grounds appear to be significantly less likely to receive adequate treatment for
depression [79], and racial minority college students appear to attend significantly
fewer university counseling sessions than their white peers [80].
Limited healthcare coverage has been cited as a financial barrier to healthcare
access in young adults [81], and being uninsured has been correlated with higher
medical treatment nonadherence in the general adult population [82]. Financial bar-
riers to mental healthcare may be partially alleviated in the college population by
access to low- or no-cost counseling center services and by recent federal health
reforms extending young adults’ insurance coverage under their parents’ plans
through age 26 [79]. However, even low-cost counseling services may be difficult
for students to afford on a weekly basis, particularly if they are financially depen-
dent on their parents but have not informed their parents that they are receiving
mental health services. Likewise, some students may be reluctant to utilize insur-
ance to cover the cost of prescriptions if they are covered on their parents’ insurance
plans and their parents are unaware that they are utilizing psychiatric services.
Economic factors may also become significant if the student is referred for off-
campus psychological services. Many mental healthcare practitioners do not accept
insurance. For students who do not have cars on campus, it can be difficult to find a
provider that takes their insurance, is accessible by public transportation, and has
openings that coincide with the student’s schedule. In this case, the student may
need to pay for private transportation or a private provider. Given the paucity of
mental health practitioners who accept insurance, it is notable that college students
with acute psychiatric concerns may need to maintain two sets of providers, one at
college and the other for when they are home during vacations. For a student who
began services during the school year, the need to repeat the daunting process of
finding a practitioner who accepts insurance (or is willing to set up a sliding-scale
fee arrangement) upon returning home for the summer serves as an additional bar-
rier to continued care.
Social and Economic Recommendations
Chung (2011) found preliminary evidence that screening for mental health concerns
in campus primary care clinics may be an effective method of identifying and
engaging students who identify as racial minorities, who tend to be underrepre-
sented at campus counseling centers [33]. Outreach programs on campus may also
serve to help counseling centers build connections with students who may be other-
wise reluctant to present for services. These presentations may be specifically tar-
geted toward groups who are known to have higher rates of stigma surrounding
mental health issues. For example, a counseling center might give a presentation at
international student orientation and designate a liaison to Asian-American students
who connects with student leaders and works to develop programming to address
their specific concerns. Given college students’ perceptions of their healthcare pro-
viders’ cultural competence have been found to predict treatment adherence [83],
providers might engage in professional development to increase multicultural
awareness, skills, and knowledge.
Healthcare Provider and Systems-Related Barriers
Studies focusing specifically on mental health treatment adherence in college stu-

dents have identified both provider-related and systems-related factors contributing
to treatment nonadherence. Provider-related factors include college students’ per-
ceptions of their healthcare providers’ cultural competence, which have been found
to predict treatment adherence even after controlling for ethnicity and health status
[83]. Furthermore, higher patient participation in care has been associated with
greater adherence to healthcare interventions among college student-patients [70],
indicating that providers who elicit patient involvement in treatment decisions may
see greater adherence by patients.
From a systems perspective, the academic calendar followed by universities has
been discussed as a factor impeding treatment continuity [47, 79]. The extended
breaks between academic semesters may lead to significant disruptions in the course
of treatment for students relying on campus-based mental health services or ser-
vices located nearby campus. Furthermore, given that students’ class schedules tend
to change with each semester, students may be unable to consistently attend longer-
term treatment programs requiring weekly attendance to individual and group ther-
apy sessions, such as Dialectical Behavior Therapy programs.
72 A. Bardin et al.
Limitations of university counseling centers have been widely discussed as

systems-related barriers to mental health treatment engagement and adherence in
the college population. Although there appear to be large variations in mental health
treatment utilization across campuses, campus-specific characteristics accounting
for this variance have not been identified [15]. Limitations such as the number of
full-time mental health providers and annual therapy session limits have been iden-
tified as important factors to consider. In a study of data from 15 colleges and uni-
versities, Eisenberg and Chung (2012) found there to be an average of 7.6 full-time
mental health providers per 10,000 students on a campus [79]. According to the
Association for University and College Counseling Center Directors’ Survey, 44.8%
of counseling centers reported placing limits on the number of individual psycho-
therapy sessions a student may attend annually [57]. Availability of on-campus psy-
chiatric services appears to be even more scarce. In the 2016–2017 school year,
34.9% of counseling centers had no psychiatric hours available on campus [57].
In a study of depression treatment in college students, Eisenberg and Chung
(2012) found higher antidepressant adherence to be associated with being pre-
scribed antidepressants by a psychiatrist rather than a primary care physician and
that students being treated by a psychiatrist were nearly twice as likely to receive
minimally adequate medication care as their peers being treated by a primary care
physician [79]. This same study found that nearly half (47%) of college students
being treated with antidepressants were prescribed by a primary care physician.
Importantly, the percentages of students being prescribed medications by psychia-
trists as compared to primary care physicians were found to be similar for a sub-
group of participants with severe depression, suggesting that symptom severity did
not differ between groups being treated by different provider types. Eisenberg and
Chung (2012) speculate that the high percentage of students receiving psychiatric
treatment from primary care physicians rather than psychiatrists is in part attribut-
able to the limitations of university medical and counseling centers, which include
a scarcity of full-time psychiatrists [79].
Healthcare Provider and System-Related Recommendations
Increasing screenings for mental illness and decreasing stigma surrounding treat-
ment may serve to increase the number of students seeking services, but this is of
little good if the healthcare system is not equipped to provide them with effective
services in a timely fashion. In fact, if college students navigating the healthcare
system independently for the first time are encouraged to pursue services after a
screening or outreach presentation only to find the logistical or financial barriers to
adherence to be insurmountable, they may feel increased hopelessness or be hesitant
to pursue services in the future. College counseling centers play an important role in
meeting the mental health needs of college students; however, they cannot be
expected to meet all the needs of every college student on campus. By way of anal-
ogy, college health and wellness centers provide key preventative and primary care
services to students, but students with serious or chronic physical health problems
maintain off-campus providers. Thus, it is important that the larger healthcare system
be equipped to meet the unique needs of college students with mental illness [84].
One systemic change that could have tremendous impact for college students is
universal licensure of mental healthcare providers. Many college students attend
college in a different state from their primary residence. At some point during their
education, they may spend a summer completing an internship, transfer to a differ-
ent college, or begin graduate school, any of which could involve a move to a third
state. At present, mental health practitioners are licensed by state. Thus, even when
secure online technology is available that would allow a college student to continue
seeing the hometown therapist she saw throughout high school while she attends a
distant college, the legality of doing so may be questionable if the college happens
to be in a different state. This greatly attenuates the potential of telemedicine, by
allowing it to help the student who travels a distance to attend an in-state university
but not the student who crosses state lines. Systemic changes that allow college
students to continue seeing one provider, via telemedicine, while they travel from
state to state in pursuit of academic/training opportunities may improve adherence
by increasing continuity of care and decreasing logistical barriers to care.
At a more local level, hospitals might develop programs designed specifically for
college students. An example of such a program is the Behavioral Health College
Partnership at Northwell Health system in New York. The program was developed
after providers observed that college students experiencing acute psychological cri-
ses often had negative experiences with the mental healthcare system, which could
interfere with adherence to recommendations for follow-up care, either by leading
students to avoid providers altogether or by preventing them from fully disclosing
their symptoms for fear of rehospitalization. The Behavioral Health College
Partnership partners with universities and colleges to provide behavioral healthcare
services to students. It aims to provide college students with a positive experience
with the mental healthcare system, thereby increasing the chances of continued
adherence to treatment recommendations. The program is comprised of the follow-
ing components:
1. Transportation: The program provides discreet transportation for students in

acute crisis from their college campus to the hospital. Each partner college’s
campus has a designated discreet location where a student in need of an emer-
gency room evaluation and/or psychiatric hospitalization can be picked up by an
ambulance. Ambulances arrive without lights and sirens. This prevents the pub-
lic spectacle of a student being taken from the college counseling center to a
highly visible ambulance.
2. Communication: Established protocols allow for smooth communication

between the referring school’s counseling center and the hospital emergency
department. This is important given students may become anxious at the pros-
pect of hospitalization during the ride from the counseling center to the hospital
and may subsequently minimize their symptoms to emergency room staff. If this
leads to discharge from the emergency room, the student may feel reluctant to
return to the campus counseling center, out of fear they will be re-referred to the
74 A. Bardin et al.
hospital. This could lead a highly vulnerable student to feel “stranded” without
access to care. Timely communication between the referring school and the
emergency department ensures that the emergency room has all the information
necessary for a thorough evaluation and is aware if the student changes their
report or minimizes symptoms upon arrival at the emergency room.
3. Specialized inpatient unit: When college students (often experiencing their first
psychiatric crises) are hospitalized on general psychiatric units alongside older,
more chronic patients, they may feel increased hopelessness or fear for their own
futures, which could exacerbate symptoms. Students may also feel they do not
belong, leading them to minimize symptoms and be discharged prematurely.
Finally, they may become hesitant to seek services or fully disclose symptoms in
the future, fearing rehospitalization. The Behavioral Health College Partnership
offers a specialized unit for college students. Clinical programming is designed
to target the most common diagnoses and concerns among college students.
Being on a unit with peers with similar ages and goals can provide some degree
of normalization of the experience of mental health issues and foster hope for
recovery.
4. School-hospital liaison services: The Behavioral Health College Partnership also
offers a liaison to communicate with the student’s school while the student is
hospitalized, provided that the student has signed a release of confidentiality.
This liaison can assist the student in notifying professors to maximize chances
absences are excused, in dropping classes or taking a medical leave of absence,
or in learning about readmission procedures (e.g., some counseling centers
require a face-to-face meeting with a student before the student may return to
campus after a hospitalization). Liaisons have pre-established relationships with
key staff members at each partner school and knowledge of each school’s proto-
cols, which facilitates timely communication. Liaisons share information regard-
ing the student’s academic standing with the treatment team, allowing the
treatment team to make appropriate recommendations regarding coursework and
housing. For example, upon learning a student is failing all his or her classes, the
treatment team might recommend a medical withdrawal from the semester.
Knowing that academic matters are being attended to can decrease anxiety and
allow a student to focus their energy on treatment for their primary psychiatric
issue. It may also decrease perceived pressure to return to school as quickly as
possible, allowing students to spend the time necessary in the hospital working
toward recovery.
5. Follow-up care: Upon the student’s discharge, be it from the emergency room or
the inpatient unit, established protocols allow liaisons to efficiently inform
schools of any information they may need. This might include information
regarding continued treatment plans or recommendations for accommodations.
The Behavioral Health College Partnership also provides outpatient services for
students referred by the emergency room, inpatient unit, or crisis center. This
allows continuity of care for students who are recovering from inpatient hospi-
talizations. It also provides local colleges with an insurance-taking clinic which
can provide individual therapy, group therapy, and medication management to
college students requiring long-term care.
In the 9 years of its existence, the Behavioral Health College Partnership has
grown from having three partner schools to having over 70, suggesting colleges
are eager for hospital support in providing mental health services to students. At
the present time, hospital-based programs providing specialized psychiatric ser-
vices for college students are far from commonplace. However, they have the
potential to significantly decrease barriers to college student adherence to mental
health treatment.
Condition-Related Barriers
Condition-related factors specific to treatment nonadherence in the college popula-

tion is an area where further research exploration is needed. With regard to depres-
sion and anxiety treatment, mental health service utilization among college students
has been estimated at 34% for students with depression and 16% among students
with anxiety [3]. Given the prevalence of depression and anxiety in the college
population, it is important to consider condition-related factors interfering with
treatment-seeking and adherence. This may be particularly crucial when consider-
ing depression treatment, as depressive symptoms in college students have been
associated with general medical treatment nonadherence [70] and likely have a
similar impact on mental health treatment adherence.
Co-occurring substance use and mental health disorders are second condition-
related factors that should be considered when discussing nonadherence in the col-
lege population. The 2016 National Survey on Drug Use and Mental Health found
that of individuals ages 18–25 with serious mental illness, nearly 35% met criteria
for a substance use disorder within the past year [85]. Importantly, college students
appear to be at significantly greater risk for alcohol use disorders than their
noncollege-attending peers, and college students with alcohol or substance use dis-
orders have been found to have a particularly low rate of mental health treatment
engagement (5%) [3]. Furthermore, in a study of young adult heavy drinkers, Peters
et al. (2012) found young adults with co-occurring cannabis use to be three times
more likely to report unintentional medication nonadherence and four times more
likely to report intentional medication nonadherence than young adults without co-
occurring cannabis use [86]. Given the prevalence of substance use disorders within
the college population and the associated low rates of treatment engagement, addi-
tional research is needed to develop interventions to engage and retain college stu-
dents with substance use disorders in treatment.
Condition-Related Recommendations
Several of the strategies discussed in previous sections may be useful in addressing

condition-related factors that contribute to nonadherence. For example, systems
designed specifically to minimize barriers to engagement and support follow-up
might benefit not only young adults who are new to navigating the healthcare system
but also students with anxiety who find scheduling, cancelling, or rescheduling
76 A. Bardin et al.
appointments intimidating or students with depression who may struggle to find the
energy or motivation to complete such tasks. Likewise, techniques designed to enhance
motivation might be considered for students with comorbid mental illness and sub-
stance use disorders. Motivational interviewing interventions have been shown to
decrease problem drinking [71–74] as well as marijuana use and non-stimulant illicit
drug use in college students [74]. Additionally, Swanson and colleagues (1999) found
that adding motivational interviewing to standard inpatient treatment for patients dually
diagnosed with psychiatric and substance abuse/dependence disorders increased the
likelihood of them attending their first outpatient treatment appointment [87].
Summary
Mental illness is a serious problem among college students. Efficacious treatments

exist; however students must be adherent to treatment recommendations in order to
obtain maximum benefit. Several unique characteristics of college students may
interfere with adherence. First, college students are often navigating the healthcare
system on their own for the first time, which can be a challenging task. Second, col-
lege students face multiple logistical barriers to adherence, which may include fre-
quently changing schedules, frequent moves between home and school, and lack of
transportation to off-campus providers. Given that college students are affected by
many different psychiatric disorders, specific condition-related barriers to adher-
ence must also be considered.
On a systems level, campus counseling centers might consider strategies to facil-
itate engagement and adherence, such as screening for mental health issues in pri-
mary care and having a staff member with the primary job of reaching out to students
who have missed appointments. However, counseling centers cannot bear the bur-
den of the college mental health crisis alone. Hospital-based programs that provide
specialized treatment tailored to treat the specific needs and concerns of college
students may also positively impact adherence. In addition, advances in technology
may mitigate some of the logistical barriers faced by college students.
This chapter provides an overview of factors impacting college students’ adher-
ence to mental health treatment and recommendations to improve adherence. It is
important to note that research in these areas remains limited. Further empirical
investigation of strategies to improve adherence is necessary. Given that the college
years often play a critical role in determining career and life trajectory, improved
mental health during this period may pay dividends for years beyond.
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Medication Nonadherence
in the Geriatric Psychiatric Population: 6
Do Seniors Take Their Pills?
Yun Freudenberg-Hua, Ryan Kaufman, Antonia Alafris,

Sukriti Mittal, Neil Kremen, and Erika Jakobson
Objectives
The objectives of this book chapter are to describe the prevalence and consequences
of poor adherence to psychotropic medications in the geriatric population; use
patient vignettes to exemplify the complexities of medication adherence; review
methodologies used in ambulatory care settings to improve medication adherence;
and list recommendations for practitioners to use in order to improve adherence and
thus optimize treatment outcomes.
Y. Freudenberg-Hua (*)
Donald and Barbara Zucker School of Medicine at Hofstra/Northwell, Hempstead, NY, USA
Center for Alzheimer’s Disease, Feinstein Institute for Medical Research, Manhasset, NY, USA
e-mail: YFreuden@northwell.edu
R. Kaufman
Psychiatry Residency Program, Zucker Hillside Hospital, Glen Oaks, NY, USA
e-mail: rkaufman3@northwell.edu
A. Alafris
Pharmacy and Clinical Services (Behavioral Health), Zucker Hillside Hospital, Glen Oaks,
NY, USA
e-mail: aalafris@northwell.edu
S. Mittal · N. Kremen · E. Jakobson
e-mail: smittal4@northwell.edu; NKremen@northwell.edu; EJakobson@northwell.edu

https://doi.org/10.1007/978-3-030-12665-0_6
82 Y. Freudenberg-Hua et al.
Data Source
The authors combined clinical experience with medical literature obtained from
PubMed, Google search engine, and the American College of Preventive Medicine
(ACPM, http://www.acpm.org). Search terms include “geriatric,” “older adults,”
“seniors,” “psychiatric,” “medication nonadherence,” “medication compliance,”
“psychosis,” and “depression.” The authors focused on studies investigating nonad-
herence to psychiatric medications in older adults or the geriatric population (age
>55 years).
Introduction
Physicians have encountered and struggled with the issue of patients not taking their
medications as prescribed since the beginning of medicine as a profession. The
ancient Greek physicians warned that patients “through not taking disagreeable
drinks, purgative or other, they sometimes die” [1]. Since the birth of modern psy-
chopharmacology and its introduction into clinical care of mental illness in the mid-
twentieth century [2], psychotropic medication use has been trending upward
globally [3–5]. It is remarkable that older people were found to be the major user
group of psychotropics. One Canadian study showed that seniors aged 70 and older
were the major user group for psychotropics and their dispense rate doubled between
1983 and 2007 [4]. Similarly, over 38% of community-dwelling non-demented per-
sons over the age of 90 in Finland received a prescription for psychotropic drugs [6].
In this large population register-based study, the rate of psychotropic drug use was
much higher among elderly people who were diagnosed with Alzheimer’s disease
when compared to the general population.
According to a recent report by the Institute of Medicine (IOM), approximately
5.6 million to 8 million Americans aged 65 or older have mental health or sub-
stance use disorders [7]. These numbers are projected to reach over ten million by
2030 [8]. A population-based study of subjects 74 years or older in Italy showed an
overall prevalence of depression of 25.1% with no evidence of gender differences
[9]. Similarly, a study in the Netherlands showed that among patients 55 years and
older who visited a general practitioner’s office, 13.7% were diagnosed with major
depression and additional 10.2% with minor depression [10]. Interestingly, only
22.9% of the patients with major depression were treated with antidepressants.
Psychotic disorders show lower prevalence in the geriatric population. For instance,
the prevalence of schizophrenia is reported to be 0.3% among people over age 65
as compared to 1% for those between the ages of 45 and 64 [11]. However, the
prevalence of psychotic symptoms in neurodegenerative disorders is high: 41% in
Alzheimer’s disease and 43% in Parkinson’s disease. In general, medication adher-
ence rates and the consequences of nonadherence have been reported to be similar
between younger and older populations, which is about 50% [12, 13].
Given the high prevalence of psychiatric symptoms in the geriatric population,
it is important to address nonadherence to psychotropic medications, since
6 Medication Nonadherence in the Geriatric Psychiatric Population: Do Seniors Take… 83
adherence is a major contributor to the success of a treatment regimen. Patient

nonadherence to pharmacologic and psychosocial treatments of geriatric depres-
sion and anxiety poses a serious barrier to effective clinical care. The rate of medi-
cation nonadherence in the treatment for geriatric depression and anxiety has been
reported to be 30–60% [12], while the median nonadherence rate to antidepres-
sants in the general population is estimated to be 53%. Among schizophrenia
patients, the overall rate of nonadherence to antipsychotics is estimated to be
roughly 50% as well [14, 15]. Data specifically addressing nonadherence to anti-
psychotics or other psychotropic medications in the geriatric population could not
be identified.
Definitions of Medication Nonadherence
A recently proposed taxonomy of medication adherence describes the process by

which patients take their medications as prescribed, composed of initiation, imple-
mentation, persistence, and discontinuation [16]. Initiation occurs when the patient
takes the first dose of a prescribed medication. Implementation is the extent to
which a patient’s actual dosing corresponds to the prescribed dosing regimen, from
initiation until the last dose. Persistence describes the length of time between initia-
tion and the last dose preceding discontinuation. Discontinuation occurs when the
patient completely stops taking the prescribed medication.
The term nonadherence to medications that is used in this chapter describes a
patient’s behavior in the following situations or combinations thereof: late or non-
initiation of the prescribed treatment; suboptimal implementation of the dosing
regimen; or early discontinuation of the treatment. In the geriatric population, it is
further relevant to distinguish between intentional and unintentional nonadherence
[17, 18]. Intentional nonadherence refers to nonadherence that is deliberate and
largely associated with the lack of motivation, whereas unintentional nonadherence
is largely driven by a lack of capacity to follow instructions or lack of resources.
However it is important to acknowledge that the reasons underlying intentional and
unintentional nonadherence are not entirely independent in that certain types of
unintentional nonadherence, e.g., forgetting, are logically more likely when the
motivation for medication adherence is low. The causal relationship between non-
adherence and treatment failure is not always clear. In some cases, nonadherence
may be the main cause of treatment failure, as illustrated in Vignette #1 and Vignette
#2. However, poor response to medication could also lead to nonadherence, as illus-
trated in Vignette #3.
Impact of Medication Nonadherence
Multiple behavioral health disorders are primarily managed by drugs, and,

hence, medication nonadherence is a major predictor of negative outcomes [19].
In fact, poor medication compliance in those with schizophrenia or bipolar
disorder has been strongly associated with increased relapse rates and decreased
functional status [19]. Nonadherence has been found to predict poorer outcomes
for patients, including increased rates of hospital admission, violence, suicide,
and premature mortality [20]. One large study showed that premature discon-
tinuation of antidepressants was associated with a 77% increase in risk of
relapse [21].
Nonadherence to medications not only has negative consequences for patients
but also for their caregivers and the healthcare system as a whole. In fact, according
to the National Community Pharmacists Association (NCPA), prescription medica-
tion nonadherence contributes about 290 billion dollars every year in added costs to
the healthcare system (https://imedicare.com/articles/consequences-of-medication-
non-adherence/. Accessed on 06/27/2018).
isk Factors for Medication Nonadherence in Geriatric

R
Population
Given the high prevalence and negative health impact of medication nonadherence
on the well-being of older adults, modifiable risk factors must be identified and
addressed. Factors associated with nonadherence to psychotropic medications
include lack of information and misperceptions about mental illness and its treat-
ment (i.e., illness beliefs), stigma, lack of family support, cognitive impairment,
adverse events, side effects, cost of treatments, psychodynamic factors, poor
physician-patient communication or relationship, and other barriers, such as cost
and lack of transportation. Identification of individual risk factors for nonadherence
is the prerequisite for effective interventions.
When medication nonadherence is assessed specifically in the elderly, contrib-
uting factors may be divided into three categories: patient-related, drug-related,
and other factors [22] as seen in Fig. 6.1. Patient-related factors include sociode-
mographics, psychosocial profile, comorbidities, cognitive ability, visual/hearing
impairment, illness beliefs, and psychodynamic factors (see Vignette #1 and
Vignette #2). Inadequate health literacy has been associated with poor medication
compliance. Denial of need for medication and adverse effects mostly contribute to
intentional nonadherence. Cognitive function plays a key role in unintentional
medication nonadherence in the elderly, since the prevalence of dementia increases
with age [23]. Elderly patients with dementia are more likely to take their medica-
tions incorrectly than those without dementia after being discharged from the hos-
pital. Poor vision and hearing may also contribute to poor medication compliance
[23]. Drug-related factors that may lead to poor medication compliance include
lack of efficacy (see Vignette #3), the number of medications prescribed, side
effects of medications, and the complexity of the administration schedule [22].
Other factors associated with medication nonadherence in the elderly include the
relationship that the patient has with his or her provider, access to medications, and
level of social support [22].
Factors Related to Adherence Types of Nonadherence

Patient factors:
• Attitudes and beliefs towards medication
• Not filling prescriptions
• Fear of stigma
• Skipping doses
• Self rated severity of illness
• Taking higher than prescribed
• Cognitive impairment
doses
• Vision and hearing impairment
• Not taking medication at the
• Lack of transportation for follow-up care
proper times
Interpersonal factors: • Discontinuation of medication
• Family and social support without discussion with treatment
• Trust towards treatment provider provider
Medication related factors: • Taking medication not currently
• Cost/Lack of insurance coverage prescribed
• Nonresponse to treatment • Taking other people’s medication
• Adverse effects
• Polypharmacy
• Complexity of dosing instruction
Fig. 6.1 Risk factors and types of medication nonadherence
Vignettes
The following clinical vignettes will highlight four issues commonly encountered
with geriatric psychiatric patients. These include premature termination of the med-
ication once they feel better, psychodynamic factors preventing open discussions,
discontinuation due to side effects, and “nocebo” effects.
Vignette #1: Illness Belief
Mr. P is a 77-year-old white married male with a history of recurrent major depres-
sion with two previous episodes. The most recent episode occurred two years ago
and was successfully treated with venlafaxine 150 mg/day. At the start of the medi-
cation trial, side effects were reviewed with the patient, and he was also advised not
to stop the medication abruptly. Given the recurrent nature of his illness, his psy-
chiatrist had recommended he stay on the medication long term in order to decrease
the risk of relapse, which the patient had agreed to without apparent reluctance.
After achieving full remission and having been assessed as clinically stable, his
visits were reduced in frequency to every three months. In between visits, the patient
had decided to discontinue the venlafaxine because he felt well and believed it was
no longer necessary to keep on taking it. His wife was aware of his decision and
held the view that this was his choice. Shortly after discontinuing the venlafaxine,
he experienced muscle aches and nausea which he assumed to be due to a viral
infection. These symptoms subsided, but he began to feel restless and had difficulty
sleeping. Over the next month, he became increasingly dysphoric and ruminative
and then began to verbalize suicidal ideation. After an emergency visit to his psy-
chiatrist, the patient was psychiatrically hospitalized. As part of his treatment in the
hospital, the patient agreed to allow his spouse to be more involved in his treatment
which included coming to outpatient appointments and monitoring his medication
adherence. A referral was made to the Visiting Nurse Service to make home visits
and reinforce medication teaching.
This case illustrates the following points:
1. The desire to discontinue medication may occur during periods of remission

which are also when follow-up appointments are likely to become less
frequent.
2. It is critical to involve family in order to optimize medication adherence. Family
members who are not actively engaged in the patient’s treatment cannot be
assumed to be strong allies in encouraging adherence. Nor can it be assumed that
such relatives would know what to do if the patient becomes nonadherent. Also
as follow-up visits become less frequent, family members become increasingly
critical to act as “the clinician’s eyes and ears,” monitoring for any intervisit
decompensation or medication nonadherence, especially for patients with lack
of insight or negative attitudes toward medication.
Medication nonadherence may result in a range of abstinence syndromes includ-

ing the loss of the beneficial effect of the medication.
Vignette #2: Psychodynamic Factors
Mrs. F is a 68-year-old woman with a long history of major depressive disorder and
generalized anxiety disorder and no known medical problems. She has a history of
a prior suicide attempt via overdose on amitriptyline, which required ICU admis-
sion and subsequent psychiatric admission. The main stressor leading up to this
suicide attempt was her only son’s graduation from college and moving out of the
patient’s house. After discharge from the psychiatric hospitalization, she followed
up with her outpatient psychiatrist of over 15 years. Despite worsening depressive
symptoms after hospital discharge, she failed to disclose these details to her psy-
chiatrist, instead reporting that she felt all symptoms were in remission. She stopped
taking her antidepressant medication altogether after the first outpatient follow-up
visit, as she felt it was futile. Two weeks later, the patient’s symptoms worsened in
severity. She attempted suicide a second time, via medication overdose. The patient
was briefly medically admitted, before a psychiatric readmission.
In exploring the main reason why Mrs. F had stopped taking her antidepressant
medication without disclosing this to her psychiatrist, the patient described that
after 15 years in treatment, she started to feel that the psychiatrist was more of a
close friend, rather than a treatment provider. She did not want to upset her psychia-
trist by letting her know that she had not been feeling well, as she felt that her
psychiatrist would think less of her if she was honest in discussing her symptoms.
The patient discussed her desire to be liked by her psychiatrist and was afraid that
her psychiatrist would become angry and consider terminating their treatment rela-
tionship in light of two back-to-back suicide attempts.
Upon further exploration, the patient described a long-standing fear of abandon-
ment, which had begun in her childhood after her parents divorced due to her father’s
physical abuse toward the patient and her mother. The patient and her mother then
moved to several different states for short periods of time before finally settling
down in a permanent residence when her mother remarried. The recent stressor of
her son moving out of her home caused the patient to re-experience these feelings,
which crossed over into the therapeutic relationship with her psychiatrist.
This case illustrates several points:
1. A psychodynamic theoretical framework can be helpful in assessing and improv-

ing patient medication adherence. Awareness of resistance, transference, and
countertransference can help account for medication nonadherence [24].
2. Psychodynamic factors can be at odds with shared treatment goals, leading to
medication nonadherence [25].
3. A history of childhood trauma and a resultant fear of a foreshortened future can
lead to failure to engage in or accept treatment.
4. Patients who have experienced neglect or abuse from caregivers in the past can
feel vulnerable and mistrustful of those providing care, which can also account
for nonadherence.
Vignette #3: Secondary Nonadherence
Mrs. Z is a 79-year-old married female with a history of recurrent major depression

treated successfully by her internist for three years with fluoxetine 20 mg/day. Her
medical problems include hypothyroidism, mild Type II diabetes, and hypercholes-
terolemia for which she is prescribed levothyroxine, metformin, and atorvastatin.
Over a period of 6–8 months, in the absence of any obvious psychosocial stressors,
she became increasingly dysphoric and withdrawn and lost 15 lbs. She neglected
her personal hygiene and stopped cooking, which she previously enjoyed doing.
When she began to verbalize that she no longer desired to go on living, her family
brought her to an Emergency Room, and she was admitted to a psychiatric unit. She
presented as disheveled with notable psychomotor retardation. She endorsed pas-
sive suicidal ideation but denied any active suicidal ideation and attributed this to
feeling tired of having to take so much medications and having to go to so many
medical appointments. Admission labs were unremarkable except for an elevated
TSH of 78 uIU/mL, a reduced free T4 of 0.4 ng/dL and an elevated HgbA1c of
6.8%. She acknowledged erratically taking her medications and then stopping them
completely but insisted this occurred recently. The initial assessment was that the
patient had a depressive relapse contributed to by medication nonadherence to both
her medical and psychiatric medications. It was speculated that coming off her
levothyroxine and becoming hypothyroid could have worsened the course of her
psychiatric illness beyond the effect of her stopping her maintenance antidepres-
sant. It was also felt that she was likely minimizing how long she had been nonad-
herent given the relatively extended period of time she had been depressed with
decline in other areas of functioning.
The initial plan was to put her back on levothyroxine and the previously effective
antidepressant fluoxetine and observe her mood as her thyroid functions improve.
However, a call to her pharmacy revealed that she was refilling all her medications
regularly every three months and that her last refills were two months ago. Her fam-
ily was asked to do a pill count which revealed there were about 20–30 more pills in
each of her pill bottles than there should have been if she were taking them without
any missed doses. Furthermore, a call to her internist revealed that her TSH was
normal two months ago, which was at the time of her last renewal and refill. Based
on the additional information that corroborated with the history provided by the
patient, it was concluded that medication nonadherence was not the cause of her
relapse but the consequence. The nonadherence was likely an end-stage event due
to an already established decompensation which reduced her motivation to take her
medications. Her plan of care was changed, and she went on to receive a course of
inpatient ECT followed by outpatient continuation ECT, while her fluoxetine was
changed to duloxetine.
This case illustrates several points:
1. Primary nonadherence occurs when nonadherence precedes and is causally

related to relapse. This can be managed by restarting the medication and support-
ing future compliance with strategies such as the use of long-acting injectable
(LAI) medications or direct family supervision. Secondary nonadherence occurs
when the symptoms fail to respond adequately or break through despite medica-
tion adherence. As the illness progresses, the patient stops his or her medication
based on the belief that it is ineffective; the patient shows general self-neglect or
even uses it as a form of suicidality. In this situation, the treatment needs to be
changed, and future mediation compliance should be supported.
2. Contact with the patient’s pharmacy can reveal if the patient has been regularly
refilling and picking up his or her medications which can be used as a proxy
measure of compliance. Contact with families to obtain bottle counts, as well as
contact with outside providers, can reveal valuable information. This becomes
very important in cases where adherence is not assured by means such as long-
acting injectable (LAI) medications, a home attendant, or placement in a super-
vised facility.
ignette #4: “Nocebo” Effects: Negative Expectations

V
About Medications
Mrs. S is a 78-year-old married female with no prior psychiatric history. She has a
medical history of hypertension, hypothyroidism, osteoporosis, and atrial fibrillation
for which she has been regularly taking losartan, metoprolol, levothyroxine, apixa-
ban, and a vitamin D and calcium supplement. About a year ago, she developed
symptoms of depression after a fall resulting in a hip fracture requiring surgery and
rehabilitation. She experienced low energy, poor sleep, anhedonia, and anxious rumi-
nation about her health and some minor matters. Her internist offered to prescribe an
antidepressant, but she declined saying she would get over this on her own and that
she was already taking so many medications. When her symptoms gradually wors-
ened, her spouse and children prevailed upon her to see a psychiatrist who diagnosed
her as having major depression. He explained to her that she would likely benefit
from an antidepressant and recommended escitalopram starting at 5 mg/day. She said
she would consider taking it but first wanted to know “all of the side effects.” The
physician described the more common side effects such as transient stomach upset
and headaches but also included hyponatremia, increased risk of gastrointestinal
bleeding, and the risk of serotonin syndrome. She took the medicine for several days
but reported that it made her feel dizzy and she felt that it affected her near vision
making reading more difficult than before. Her spouse noted that the dizziness she
reported occurred within what seemed to be just seconds to minutes after taking
escitalopram and that she had reported the same complaints about dizziness and
vision before starting the medication. The psychiatrist suspected that negative pre-
conceived notions about psychiatric medications along with heightened anxiety due
to the depression itself led Mrs. S to attribute vague pre-existing somatic complaints
to her medication and then to discontinue it. In a follow-up appointment, the patient
was given support and validation about how uncomfortable it must have been for her
to start this medication. Her regimen was switched to a low-dose initiation strategy
starting at 2.5 mg of escitalopram every other day, and a pre-arranged phone contact
was set up between visits. She reported less side effects, and she was eventually able
to tolerate titration of the escitalopram to 10 mg/day. After several weeks, her symp-
toms of depression began to improve noticeably.
This case illustrates the following:
1. Older patients are often not self-referred to psychiatrists; they are more often
brought in by concerned family members. This dynamic may create unique chal-
lenges in convincing patients to initiate and implement newly prescribed psycho-
tropic medications and to continue long term with their medication regimen.
2. Anxiety-driven medication discontinuation is a common cause of nonadherence
and treatment failure that needs to be recognized and managed.
3. More generally, various negative expectations about medications result in the
nocebo effect which is the opposite counterpart of the placebo effect and also a
significant potential source of medication nonadherence [26, 27]. For example,
it has been demonstrated repeatedly that telling patients about medication side
effects results in an increased likelihood of side effect complaints that are often
not attributable directly to the known mechanism of action of the medication. It
is important for clinicians who frequently prescribe psychiatric medications to
be familiar with the multitude of possible nocebo effects and develop ways to
mitigate them.
Interventions
Nonadherence with medications in the geriatric population presents a complex and

multidimensional healthcare problem, and as a consequence, substantial numbers of
patients do not benefit optimally from pharmacotherapy, resulting in increased mor-
bidity and mortality as well as increased societal costs. Potential causes may be
related to the patient, treatment, and healthcare provider as discussed above. Based
on this knowledge, a wide variety of interventions were suggested for improving
medication adherence as listed in Table 6.1.
Although none of the suggested interventions seem unreasonable, evidences sup-
porting the efficacy of each intervention on its own are lacking. Elderly individuals
are often underrepresented in the clinical trials that assess medication adherence
interventions [28]. When considering interventions for nonadherence, it is impor-
tant to note that a review of adherence trials in the literature found that most inter-
ventions fail in their aims to improve medication adherence [28]. Moreover, the
effects of interventions differed by clinical condition, and most interventions that
were associated with adherence improvement did not lead to improvements in
health outcomes, such as quality of life, patient’s satisfaction, morbidity, mortality,
healthcare utilization quality of care, and costs.
Table 6.1 Examples of medication adherence interventions

Intervention Examples
Behavioral Financial incentives
Memory aids (pill organizers, packages with calendar reminders,
refill reminder postcards, illustrated medication schedules)
Motivational interviewing sessions
Shared clinical decision-making
Educational Provision of written medication administration instructions
Individual/group psychoeducation about illness and medication
regimen
Structured programming/rehabilitation programs
Integrated care Frequent, regular follow-ups with primary care physician
Inclusion of pharmacist and/or nursing case manager in patient care
team
Accurate medication reconciliation between various providers
Pharmacist and physician access to patient adherence data
Use of caregiver assistance
Case management
Technological Reminder systems via phone calls, mobile messaging, or video
teleconferencing
Automated pill dispensers
Consolidated blister packaging containing all daily pills
Automated communication platforms such as daily check-ins
Medication regimen Reduction of unnecessary polypharmacy
simplification Use of extended release
Formulations: such as once a day dosing or use of combination pill
formulations
Table 6.2 The AIDES method for improving adherence to medications

A: Assessment Completing a comprehensive medication assessment, assessing all the
causes that may cause nonadherence, reconcile medications
I: Partnering with patients to ensure individualization of the regimen based
Individualization on joint decision-making
D: Choosing appropriate documentation to assist with communication
Documentation between patient and provider(s)
E: Education Provide accurate and continuing education tailored to the needs of the
individual patient
S: Supervision Continuing supervision of the medication regimen and adherence
No single intervention strategy has been shown to be effective in improving adher-

ence across all patients, conditions, and settings. Strategies to improve geriatric patient
adherence need to be individualized and multidimensional, including consideration of
age-related cognitive and comorbidity factors, environmental and social factors, func-
tional status, and belief systems. To this end, Bergman-Evan and colleagues proposed
the so-called AIDES method [29] which stands for Assessment, Individualization,
Documentation, Education, and Supervision (Table 6.2). The AIDES model builds on
published interdisciplinary research and theory designed to optimize medication
adherence and safety and is an intervention directed at factors under the control of
healthcare providers and nurses caring for older adults who require medication ther-
apy in general. This approach is based on the conclusions of a meta-analysis of 153
studies of interventions intended to improve adherence that found no single strategy
had any clear advantage over another, but combined cognitive, behavioral, and affec-
tive interventions were more effective than any single intervention [30]. This approach
is not specific only to geriatric psychiatric patients.
Here, we describe detailed guidelines according to the AIDES method.
A: Assessment
Providers need to identify risk factors that may lead to nonadherence among elderly
patients through thoroughly conducted assessments.
1. Demographic characteristics: Information on race, marital status, living

arrangements, and availability of social network may help to identify elderly
patients who are at risk for nonadherence [31]. Inadequate or marginal health
literacy among the elderly is common and warrants assessment [32]. The level
of compliance positively correlates with the educational status, illness beliefs,
and prescribed medications. The overall level of compliance is noted to be
higher in patients living with spouse or families and those without any func-
tional impairment [33].
2. Comorbid conditions: Cognitive impairment ranks high as a causal factor for
unintended nonadherence in the geriatric patients [33]. Routine screening for
cognitive deficits is important to providing quality care to older adults. The
Mini-Mental State Exam or a similar tool may alert the professional to poten-
tial problems. Patients with comorbid cognitive impairments likely need a

multifaceted approach due to their increased dependence on caregivers and
reduced effectiveness of external memory aids. The World Health Organization
suggests more integrated care with dementia patients, their families, physi-
cians, and pharmacists with regularly scheduled medication reviews as a part
of a comprehensive approach to medical care, of which adherence is a part of
a broader model of integrated care [34]. Arlt and colleagues discussed the
strategies to help facilitate medication adherence in cognitively impaired
elderly patients that includes reduction of polypharmacy, adjusting medication
regimens to personal habits, and condensing doses to as few administrations as
possible [23].
3. Medication assessment: Direct questioning at the patient interview may not
provide accurate assessments, especially if closed-ended, judgmental ques-
tions are posed. The “brown bag assessment” is a well-established method of
providing information regarding the medication regimen. Better decisions are
made when all medications are available for assessment [35]. Prescription
refill records and pill counts often overestimate true adherence rates. A com-
prehensive assessment of older adults’ ability to self-administer their medica-
tions can be ascertained with the standardized and validated scale called the
Drug Regimen Unassisted Grading Scale (DRUGS) [36]. Medications them-
selves may contribute to nonadherence secondary to adverse effects. The
unique characteristics of different medication therapies, for example, the fre-
quency and timing of doses, the number of medications required, and associ-
ated side effects, can influence suboptimal adherence. Because it can be
challenging for a patient to organize taking different medications at different
times of day, the assistance from family members or friends is a key compo-
nent of adherence for many elderly individuals, like Mr. P (Vignette #1).
Simplification of dosing regimens helps with adherence. A meta-analysis of 76
studies showed that adherence decreased with increasing frequency of the regi-
men, that is, 72% of patients on a once-daily regimen adhered with treatment,
69% with a twice-daily regimen, 65% with a three times daily regimen, and
51% with a four times daily regimen [37]. Adherence can be improved by
using specific forms of drug packaging. Weekly boxes and single-dose blisters
with an indication of day and time are commonly used. Zedler and colleagues
studied the effects of calendar packaging in 10 trials, including a total of 1045
patients [38]. Six of these studies reported positive effects on adherence. LAI
medication has been recommended for patients with mainly intentional nonad-
herence. A large meta-analysis showed that LAIs are more effective in prevent-
ing hospitalizations and reducing mortality in patients with psychotic disorders
in the general population [39].
I: Individualization
The ways to individualize treatment is to tailor treatment to patient’s needs, setting

patient goals based on patient preference, and increasing the humaneness of care.
1. Shared decision-making (SDM): When patients participate in decision-making

and understand what they need to do, they are more likely to follow through.
SDM is an emerging best practice in behavioral and physical health that aims to
help patients in treatment and recovery to have informed, meaningful, and
collaborative discussions with providers about their healthcare plan [40].

Contemporary evidence-based approaches to the management of long-term
medical illnesses are based on the process of SDM. To accomplish SDM, Glyn
Elyn and colleagues proposed a three-step model for clinical practice based on
three key steps, namely, choice talk, option talk, and decision talk as illustrated
below [41] as seen in Fig. 6.2.
DELIBERATION
Initial
Informed
Preferences
Preferences
Choice Option Decision Decision

Talk Talk Talk
Decision Support
Brief as well as Extensive
Key to the figure
A process where patients become aware of choice, understand

Deliberation their options and have the time and support to consider ‘what
matters most to them’: may require more than one clinical
contact not necessarily face-to-face and may include the use of
decision support and discussions with others.
Choice talk Conveys awareness that a choice exists – initiated by either a
patient or a clinician. This may occur before the clinical
encounter.
Option talk Patients are informed about treatment options in more detail.
Decision talk Patients are supported to explore ‘what matters most to them’,
having become informed.
Decision Support Decision support as designed in two formats: 1) brief enough to
be used by clinician and patient together and 2) more extensive,
designed to be used by patients either before or after clinical
encounters (paper, DVD, web).
Initial Preferences Awareness of options leads to the development of initial

preferences, based on existing knowledge. The goal is to arrive
at informed preferences.
Informed Preferences Personal preferences based on ‘what matters most to patients’,

predicated on an understanding of the most relevant benefits
and harms.
Fig. 6.2 Three-step model for shared decision-making

2. Social and economic factors: Social and economic factors such as poverty,
transportation challenges, medication costs, and inadequate insurance cover-
age are drivers of medication nonadherence. Clinicians observe that patients
with similar health conditions, sociodemographic attributes, and socioeco-
nomic status may make very different choices when it comes to filling their
prescriptions [42]. Efforts to reduce cost-related medication nonadherence
would benefit adherence in older patients with chronic diseases who are at risk
for cost-related nonadherence. There is an evidence for a significant overall
decrease in cost-related nonadherence following Medicare Part D implementa-
tion [43]. The authors noted the beneficial effect on adherence by discussing
transportation challenges, accessibility, and affordability of the medications
during multiple phases of the treatment process, including initiation, imple-
mentation, and discontinuation.
D: Documentation
Healthcare providers can improve adherence by documenting and reconciling medi-

cations in electronic medical records during each encounter. Anticipating using pre-
dictive analytics thus eliminates risk factors before they lead to problems. Engaging
pharmacists and other clinicians and proactively screening patients for potential
problems related to medication adherence are initial steps toward enhancing medi-
cation use.
Big data analytics, which incorporate medication refill patterns, encounter data,
and symptoms, can be used to proactively identify patients that are at highest risk
for medication adherence failure. For example, gaps in refills of chronic mainte-
nance medications strongly correlate with risk of rehospitalization. With the use of
predictive analytics and integrated data systems, the ability to identify patients who
are at risk for medication nonadherence on the basis of past behaviors and personal
characteristics is increasingly available. For example, high-risk patients leaving the
hospital are less likely to be readmitted if they get their prescriptions before they are
discharged. Follow-up consultations by pharmacists can assist patients with side
effects that may otherwise cause patients to abandon their treatment plan and pro-
vide patients with education on how to take medications correctly. Succinct written
instructions which include drug cards, medication charts, or any written material in
a plastic sheet or laminated sheet also help in improving adherence in elderly
patients who find it difficult to comprehend much of the information which is pro-
vided during medication counseling. This step could be implemented into the elec-
tronic prescribing system automatically to assist the providers. Expanding the effort
to collect patient-reported outcomes (PROs), such as real-time symptoms and per-
ceptions of medications, is a crucial next step in the evolution of data systems to
improve population health. The combination of predictive analytics, electronic
medical records data, and PROs will allow for the efficient allocation of resources
to the right patients at the right times.
E: Education
Healthcare providers can educate patients to promote medication adherence by ade-

quately explaining how to take a medicine, by raising and discussing with patients
any reluctance to take medicines, and by discussing with patients their beliefs and
knowledge about their illness and associated treatments. Education about mental
illness and medication does not guarantee adherence. However, patients need infor-
mation regarding their illness and the prescribed medications to be partners in their
own care. Interventions focusing on changing attitudes toward mental illness and
need for medication could improve intentional adherence. Education should focus
on explaining the nature of the mental illness with the typical course, duration, and
estimated prognosis as well as the risk benefit analysis for pharmacological
intervention.
1. Written instructions: Morrow and colleagues identified a schema for teaching

older adults about medications [44]. This schema for written medication
instructions includes the name of the medication (both trade and the generic
name), purpose (why the drug is necessary and expected effect), dose (units,
e.g., milligrams number of pills, schedule), duration (How long will it be
needed?), warnings (interactions with food or over-the-counter medications or
activities such as driving), mild side effects (duration and possible remedies),
severe side effects (what to do if occur), and emergency (plan for the worst-
case scenario).
2. Psychosocial interventions: Cognitive behavioral therapy (CBT) and motiva-
tional interviewing focusing on adherence can be utilized to improve adher-
ence [45]. Reports from RTCs for these types of adherence therapies in
non-geriatric populations show mixed efficacy in improving adherence [14,
15]. Didactic interventions such as multidimensional psychoeducation address-
ing certain mental illness, including familial, social, biological, and pharmaco-
logical perspectives, have been shown to reduce nonadherence in the general
population [15, 17].
S: Supervision
Ongoing supervision ensures positive effect on medication adherence.
1. Case management: Viswanathan and colleagues conducted a review assessing

the comparative effectiveness of patient, provider, systems, and policy interven-
tions that aim to improve medication adherence for chronic health conditions
[46]. They found evidence supporting case management and collaborative care,
assertive community treatment (ACT), and intensive case management (ICM)
to be effective. In the Prevention of Suicide in Primary Care Elderly:
Collaborative Trial (PROSPECT), 20 primary care practices were randomized
to an intervention consisting of a depression care manager working with pri-

mary care physicians to provide algorithm-based care or usual care. Among
older adults with major depression, the intervention was associated with
improvement in depressive symptoms, remission, and suicidal ideation.
Specifically, a significantly larger proportion of intervention patients with major
depression responded to treatment, and rates of suicidal ideation declined faster
in intervention patients [47]. The beneficial effects on remission of depression
persisted at 24 months, with 45.4% of patients with major depression in inter-
vention practices in remission, compared with 31.5% in usual care [48]. This
study also showed that the depression care manager working with primary care
physicians to provide algorithm-based care for depression can mitigate the det-
rimental effects of depression on mortality.
2. External interventions: External interventions aid elderly individuals by provid-
ing cognitive cues to remind patients to take medication (e.g., phone call/mes-
saging reminders) or by tracking if medication was taken as intended (e.g., pill
organizers) [49]. Campbell et al. identified one study of telephone/tele-video
communication at each dosing administration that improved adherence [50].
Insel found that individually tailored interventions like initiation of a medication
organizer with specific placement in the home to increase visibility of the orga-
nizer improved adherence in elderly [51].
For treatment providers, the following practical tips can be printed and given to
the elderly patients.
Practical Tips to Help Maintaining Adherence

• Underlying premise: Keep it simple.
• Written instructions.
• Take medication at the same time(s) each day.
• Use cues: alarm watch, smart speakers, and automated dispenser with
voice-activated message.
• Incorporate the medication regimen into daily routine (take after brushing
your teeth in the morning, take with breakfast, take after dinner).
• Use a pill box to take extra doses of medications travelling.
• Get pharmacy to put medications in blister pack for each week.
• Make sure you don’t run out of your medications.
• Utilize supportive network of family and friends to ensure adherence.
• Include pharmacists and other clinicians proactively for potential problems
related to medication adherence using predictive analytics and integrated
data systems.
• Schedule appropriate follow-up; long intervals between follow-ups can
cause poor adherence.
Future Directions
While important progress has been made in diagnosing of mental illness in older
adults, greater focus now needs to be placed on treatment engagement and continua-
tion of improvements in quality of life, reducing suffering and achieving better func-
tional outcomes. The dearth of literature evaluating medication adherence in the
geriatric psychiatry population necessitates continued research into this area. Future
research on nonadherence in geriatric psychiatry needs to focus on identifying inter-
ventions that lead to improvements in health outcomes, such as quality of life, patient’s
satisfaction, morbidity, mortality, healthcare utilization, quality of care, and costs.
Evidence-based research will increasingly rely on large datasets from electronic
medical records to evaluate clinical outcomes. Technology-based adherence tracking
devices have only recently reached a level of reliability and utility to be considered
in clinical practice. Adherence intervention technology includes smartphones, apps,
and GPS activity trackers. These methods may be implemented in each step of the
AIDES approach, such as drawing information from electronic health records to tai-
lor individualized and automated interventions, printing effective medication instruc-
tions, providing real-time feedback to patients and providers, leveraging incentives,
utilizing predictive algorithms to identify patients at increased risk for nonadherence,
and initiating a personalized supervision. The ability to utilize technological devel-
opments to collect and analyze data on treatment methods and outcomes would also
generate new insights and facilitate clinical trials of these new interventions, thus
closing the gaps in evidence. As researchers establish cost-effectiveness, sustainabil-
ity, and patient and provider acceptance, technology-based adherence intervention
systems are likely to be increasingly adopted into small and large practice settings.
Acknowledgment We thank Dr. Barnett Meyers for his assistance with this manuscript.
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Part II
What Makes a Good Doctor?
Communication Skills Training
to Enhance Patient Adherence 7
R. Ellen Pearlman and Calvin Chou
octors Receive Precious Little Training

D
in Communication Skills
Communication is the most common “procedure” performed by physicians. During

their careers, clinicians have at least 200,000 face-to-face encounters with patients
[1]. Yet generations of physicians have had little to no training to develop expertise
in these critical skills. If you needed electroconvulsive therapy, would you trust a
psychiatrist who told you, “I heard how to do this procedure and have seen it a
couple of times, but over the course of time, through trial and error, I think I have
found what works for me”? That is essentially how physicians were “trained” in
communication skills for decades.
I t Is Thus No Surprise that Most Doctors Need Work

on Their Communication Skills
Even though most of us know that it is the right thing to communicate effectively,
humanistically, and compassionately, fewer of us know that over the past quarter-
century or so, patient-clinician communication has become a prominent field of
scientific research. Important findings from these data affect almost every patient
interaction we have. What follows is a summary of what this body of literature tells
us about how doctors communicate with patients.
R. E. Pearlman (*)
Hempstead, NY, USA
e-mail: r.e.pearlman@hofstra.edu
C. Chou
University of California, San Francisco, CA, USA
e-mail: Calvin.Chou@ucsf.edu

https://doi.org/10.1007/978-3-030-12665-0_7
104 R. E. Pearlman and C. Chou
Doctors Don’t Always Elicit the Patient’s Concerns
Building on work originally started by Beckman and Frankel, Marvel and col-
leagues analyzed audiotapes of 264 physician-patient encounters from a conve-
nience sample of 29 board-certified family practitioners from rural, semirural, and
urban settings across the United States and Canada [2, 3]. In a quarter of these
interviews, the doctor did not even solicit the patient’s concerns.
octors Assume that the Chief Complaint Is the Patient’s

D
Primary Concern
Generations of medical students have been taught to elicit the “chief complaint” by
asking something akin to “What brings you here today?” Once the patient answers,
the students are expected to launch into the history of present illness, preferably
through the use of open-ended questions. Underlying this teaching is the assump-
tion that the patient always leads with his or her primary concern.
In their landmark study, Burack and Carpenter demonstrated that the presenting
complaint is concordant with what the patient identifies as the principal problem in
76% of cases when the complaint is a physical problem and only in 6% of cases
when the complaint is psychosocial [4].
In a similar study of 77 doctor-adult patient interactions at an HMO in Baltimore,
Starfield and colleagues found that the patient and the practitioner agreed on the
main problem only 55% of the time [5].
Doctors Frequently Interrupt Patients
In their study of family doctors, Marvel and colleagues found that physicians redi-
rected the patient’s opening statement after a mean of 23.1 seconds; and patients
were able to complete their opening statement in only 28% of interviews [3]. Of
those patients who had been redirected initially, only 8% of them ever returned to
complete their initial concern.
One might argue that physicians have to cut patients off, otherwise they might
never stop talking. However, in the study by Marvel and colleagues, of those patients
who were allowed to complete their opening statements, either uninterrupted or
after initial redirection, the mean time to completion was only 26 seconds [3].
Interestingly, whether or not the patient was able to complete their opening state-
ment did not affect visit length.
Singh Ospina and colleagues published a study in July of 2018 demonstrating
that we have not made much progress in the two decades since Marvel’s study
[6]. In an analysis of 112 recorded clinical encounters, clinicians elicited an
agenda in only 38% of them, and the median time to interruption of the patient
was 11 seconds.
7 Communication Skills Training to Enhance Patient Adherence 105
octors Don’t Elicit the Full Range of the Patient’s Concerns,

D
Especially Psychosocially Oriented Ones
In the study by Starfield and colleagues, the mean number of problems per patient
was 2.1 [5]. When they compared what the physician listed as problems to what the
patient listed as problems, only half of them overlapped.
Stewart and colleagues interviewed 299 patients and their five family doctors in
Ontario to determine the doctors’ knowledge of the range of their patients’ problems
[7]. The results indicated that the doctors knew all of their patients’ complaints only
46.5% of the time, knew the extent of disturbances in their patients’ daily living only
37.8% of the time, and knew all of their social problems only 22.7% of the time.
Why does this matter? In the study by Starfield and colleagues, problems identi-
fied by both the practitioner and the patient were twice as likely to demonstrate
moderate or marked improvement or resolution than those identified only by the
practitioner, regardless of the severity of the problem [5]. In the case of Stewart and
colleagues, the patient’s perception of recovery was associated with the level of
doctor’s knowledge of his or her problems [7].
octors Don’t Acknowledge Emotional Cues and as a Result Have

D
Longer Visits and Are Plagued by “Doorknob” Questions
Levinson and her colleagues analyzed audiotapes of 116 randomly selected doctor-
patient interactions in practices in Oregon and Colorado, 54 of which were with
primary care doctors and 62 of which were with surgeons [8]. In slightly over half
of the visits, patients gave emotional cues to their physicians. Physicians responded
to these emotional cues in 38% of the surgical visits and 21% of the primary care
visits, confirming that the vast majority of patients’ emotional cues go unacknowl-
edged. Furthermore, primary care visits were, on average, 2.5 min longer and surgi-
cal visits 1.5 min longer when the physicians missed opportunities to respond to an
emotional cue.
Qualitative data show the reasons for that surprising finding: when we do not
detect emotional cues from patients and do not respond verbally with empathic
statements, patients reiterate the emotions that they experience, either until the phy-
sician responds or, in the worst case, until the patient gives up [9].
Doctors Frequently Use Incomprehensible Jargon
In their analysis of 86 transcripts of conversations between residents and standard-

ized patients about prostate cancer or breast cancer screening, Deuster and col-
leagues found that 85% of the jargon used by residents was not explained [10]. Even
when jargon was explained, there was an average lag of eight statements between
when the jargon word was used and the word was explained.
The Consequences of Ineffective Communication Are High
The negative outcomes of our ineffective communication are measurable: outpa-

tients prefer not to return to clinicians with poor communication skills, and readmis-
sion rates for inpatients are higher [11, 12].
In their survey of over two million patients in the United Kingdom, Nagraj and
colleagues found that the strongest association with high rates of disenrollment
from a practice was low practice scores for doctor-patient communication [11].
In their qualitative analysis of focus groups of readmitted patients and their pro-
viders, Acher and colleagues found that patients cited inadequate communication,
specifically in the form of discharge instruction and education, as an important con-
tributor to readmission [12].
Perceived failures in communication, or patient experiences of humiliation by
poor communication from clinicians, are associated with more malpractice claims.
Compared with claims primary care physicians, no-claims primary care physicians
oriented patients to the flow of the visit, laughed and used humor more, solicited
patients’ opinions, checked understanding and encouraged patients to talk, and
spent longer in routine visits [13].
Audiotapes of surgeons speaking to their patients were coded, both with words
intact as well as just for voice tone. Ratings of higher dominance and lower concern
in voice tones significantly identified surgeons with previous malpractice claims
compared with no-claims surgeons [14].
In a survey of patients and family members who were suing their doctor in the
United Kingdom, the respondents reported poor satisfaction with the doctor’s expla-
nation of what had happened. The reason cited for suing was “I wanted an explana-
tion” in 91% of cases and “My feelings were ignored” in 67% of cases [15].
he Converse Is True as Well: Effective Communication Has

T
a Major Impact on Patient Outcomes
Overall, effective communication leads to increased patient satisfaction, increased

trust with the clinician, and functional and psychological well-being of the patient.
Effective communication also leads to improved outcomes in specific diseases,
including a small but significant absolute risk reduction of mortality from coronary
artery disease [16], improved control of diabetes and hyperlipidemia [17], better
adherence to antihypertensives [18], bereavement adjustment in caregivers of can-
cer patients [19], and higher self-efficacy of adherence to HIV medications [20].
Patients with medically unexplained physical symptoms (the kind that lack easily
identified biomedical diagnoses) report significantly higher levels of satisfaction
when their clinicians use effective communication skills [21, 22].
Kelley and colleagues in 2013 embarked on a systematic review and meta-analysis
of randomized controlled trials on the influence of the patient-clinician relationship on
health outcomes [23]. After an extensive literature search and review, they analyzed
13 randomized controlled trials involving adult patients in which the patient-clinical
relationship was systematically manipulated (meaning that some intervention was

made to improve it) and healthcare outcomes were either objective or a validated sub-
jective measure. Using a random effects model, they were able to conclude that while
the overall effect size was small, it was statistically significant and in the same range as
the effect size of five years of daily aspirin on prevention of myocardial infarction.
Good Communication Also Improves Patient Adherence
With regard to the impact of physician communication on patient adherence, a

meta-analysis demonstrated that patient adherence is positively correlated with
effective physician communication [24]. There is a 19% higher risk of nonadher-
ence among patients whose doctors are poor communicators versus patients whose
doctors communicate effectively. With physician communication training, the odds
of adherence are 1.62 times higher than without communication training.
Safran and colleagues conducted a cross-sectional observational survey, using a
validated questionnaire, of 7000 adults employed by the Commonwealth of
Massachusetts to determine the relationship between seven defining elements of
primary care (accessibility, continuity, comprehensiveness, integration, clinical
interaction, interpersonal treatment, and trust) and three outcomes (adherence to
physician’s advice, patient satisfaction, and improved health status) [25]. Their find-
ings revealed that two variables (1) physicians’ comprehensive (“whole person”)
knowledge of patients and (2) patients’ trust were the variables most strongly asso-
ciated with adherence. With other factors equal, adherence rates were 2.6 times
higher among patients with whole-person knowledge scores in the 95th percentile
compared with those in the 5th percentile (p < 0.001).
he Good News Is that Communication Skills Can Be Taught

T
and Actually Improve Clinician Satisfaction
Clinicians practicing in diverse settings (primary care, inpatient, surgical, subspe-

cialty) can improve fundamental as well as advanced communication skills such as
motivational interviewing [26], family meetings in critical care settings [27], end-
of-life communication [28], and cross-cultural communication [29]. Clinicians who
elicited the patient’s full list of concerns and prioritized the agenda for the encounter
reported an increased sense of control and enjoyment [30]. Explicitly addressing
patients’ emotional cues saves time: for surgeons, visits decrease by an average of
1.5 min and, for internists, by 2.5 min [8].
Boissy and colleagues published an observational study conducted at a large,
multispecialty academic medical center comparing roughly 1500 attending physi-
cians who participated in an 8 hour interactive, skills-based communication training
to a group of controls [31]. Statistically significant differences were found between
those trained and those not for patient satisfaction scores, improvement in empathy,
and reduction in multiple dimensions of burnout.
o Where Did the Generations of Physicians Before

S
Us Go Wrong?
Physicians trained in prior eras framed communication as a concept to be learned, an

attitude or a value to adopt through observation of effective role models. It is critical
to reframe communication as a set of learnable skills. Once this reframing occurs,
one realizes that everything we know about achieving mastery through deliberate
practice and feedback applies to learning communication skills [32]. No one would
ever expect a proceduralist to attend an hour-long didactic and then immediately
perform a new procedure with complete proficiency. Data on effective communica-
tion skills programs show that they are typically full-day trainings, start with learn-
ers’ goals and needs, and focus on application of learnings to clinical practice [33].
Skills-based exercises, including role-play, in small groups or through individu-
alized coaching, are more effective than isolated didactic presentations; specific
feedback on communication skills is the most important element that contributes
to heightened patient experiences of care. Specifically, as faculty of the Academy
of Communication in Healthcare, we teach an educational framework and rationale
for communication skills, followed by a demonstration of how the skills apply to a
typical clinical case. Then, in small group skills sessions, rather than using canned
patient scenarios, we invite participants to volunteer their own clinical cases to
adapt these skills to their particular practices. For example, Dr. Hospitalist might
invoke a case of an inpatient admitted for pneumonia, whom another group mem-
ber will portray. In a skills session using the framework of agenda setting, we will
carefully set up the scenario so that Dr. Hospitalist will succeed in eliciting the
patient’s full list of topics to discuss. Once the short scenario is completed (typi-
cally in less than 5 min), we will ask Dr. Hospitalist to reflect on how effectively
she used the skills, and then we will ask other group members for feedback. In a
diverse group of providers, cases can range broadly, including those that involve
inpatient and outpatient circumstances, medical and surgical procedures, and gen-
eral, specialty, and subspecialty-based professionals. Our experience in using this
learner-centered method is that the vast majority of clinicians find the skills helpful
in their everyday practices and feel renewed dedication and energy in their careers.
Looking Forward
One positive outcome from the decades of literature described above is that medical
schools are now incorporating the development of communication skills into their
curricula. It is now unusual to find a medical student who has not been assessed by
standardized patients in an Objective Structured Clinical Examination (OSCE), and
such an assessment, conducted by the National Board of Medical Examiners for the
USMLE Step 2 Clinical Skills examination, is now required for medical licensure.
We offer our experience at the Zucker School of Medicine at Hofstra/Northwell
as an example of the type of communications curriculum that is offered in medical
school today.
Years 1 and 2
Medical students at the Zucker School of Medicine have an intensive 8-week

course in basic communication skills starting the 1st week of medical school.
Using the three function model of the medical interview described by Steven Cole
and Julian Bird [34], students work in small groups of six students with two facili-
tators for 2 hours each week. Each session starts with a framing talk and discus-
sion, followed by individual role-play with feedback. The skills covered in these
8 weeks include (1) engaging with/introducing yourself to the patient; (2) under-
standing the patient’s chief complaint and agenda setting; (3) gathering a history of
present illness; (4) learning highly specific empathy skills; (5) obtaining a com-
plete history including a review of systems and social history; and (6) establishing
trust: gathering sensitive information from your patient. The course culminates in
a session in the clinical skills facility where the students have the opportunity to
take a full history from a standardized patient and receive individualized
feedback.
After this initial course, students dive deeper into more advanced communi-
cation skills in subsequent courses. Each class is part of the patient, physician,
and society curricular subcomponent and integrated with the basic science con-
tent of the week. Students continue to be taught in longitudinal learning com-
munities, that is, small groups with continuity between nine students and one
or two facilitators, using the format of a large group framing talk and discus-
sion followed by individual role-play with feedback. The more advanced ses-
sions in the first two years include (1) sharing emotionally challenging news;
(2) taking a sexual history; (3) communicating across cultures; (4) screening
for alcohol and drug abuse; (5) motivational interviewing using brief action
planning; (6) explaining medications to patients and assessing adherence; (7)
communicating with pediatric patients, adolescents, and their parents; (8)
screening for intimate partner violence; (9) working with patients with limited
English proficiency; (10) psychiatric interviewing; (11) cultivating sources of
support, meaning, and hope; and (12) motivational interviewing using the brief
negotiated interview.
Over the course of the first 2 years, students are expected to put their communi-
cation skills to practice with real patients. Clinical contact with patients begins in
the first course when students are certified as emergency medical technicians and
participate in ambulance runs. In every course thereafter, students are paired one-
on-one with community preceptors and see patients for a half a day a week. These
community preceptors include family practitioners, internists, obstetricians, pedia-
tricians, surgeons, and psychiatrists who are matched with students at particular
times to coincide with basic science content.
Finally, students are assessed in their communication skills at the end of every
course with an Objective Structured Clinical Examination (OSCE) in which they
interact with standardized patients who fill out behaviorally specific checklists.
Once a year, the students meet one-on-one with a faculty member to review their
checklists and to watch videotapes of their performance.
Years 3 and 4
During the clerkship and acting internship years, students continue to hone their
communication skills in the clinical setting of the tertiary hospitals. Three times
during the third year, clinical learning is supplemented by small group interactive
sessions with role-play on communication topics related to palliative care, the opi-
oid crisis, and social determinants of health. Basic communication skills continue to
be reinforced by OSCEs which occur after every clerkship and count toward their
overall grade. In this way, the school works to prevent the dip in empathy that is
known to occur in the 3rd year of medical school.
In the 4th year, all students have a mandatory rotation through one of the inten-
sive care units. Embedded into this rotation are weekly rounds on palliative care and
ethics, held just for the students, in which they present difficult patient experiences
to an interdisciplinary group of palliative care, ethics, and communication experts.
Through these sessions, they learn valuable approaches to communication with
patients and their families at the end of life.
Evidence of Impact
Each year, communications are rated among the top curricular components, and
over 98% of the graduating class responds “strongly agree” to the statement “I have
the communication skills necessary to interact with patients and health profession-
als” on the AAMC’s Graduate Questionnaire.
Conclusion
While communication skills training is not a healthcare panacea, it can reliably

improve quality of care, outcomes, patient experience, and adherence to treatment.
As recent technological advances drive people toward interacting with devices
rather than directly with others, in the healthcare setting, interpersonal communica-
tion skills have never been more important. In the high-stakes setting of health,
well-being, and wellness, a trustful, caring relationship between patient and clini-
cian leads to better outcomes for both.
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Humanism and Medical Treatment:
Clinicians and Patients Finding 8
Common Ground
Peter Weissmann, Alice Fornari, and William T. Branch Jr.
Medicine begins in philosophy; philosophy ends in medicine. [1]

– Aristotle
What Is Humanism in a Clinical Context?
Modern medicine has become increasingly technological. As technical procedures

become more numerous and complicated, their performance requires more special-
ized training and increasingly narrow focus of the physicians performing them.
Consequently, medical practice groups and hospital systems that offer these ser-
vices have become complex and challenging to navigate for patients and clinicians
alike. The electronic medical records that are required to function in such environ-
ments demand standardization and data entry that may not correspond to patients’
goals for a medical encounter [2–7]. The pressure felt by clinicians to generate
revenue further complicates the current climate of practice [8, 9]. Together, these
factors strain the relationships of patients with their providers.
Yet every medical encounter is at its core a human experience, individual and
unique. Despite the increasing technology that permeates modern medical care,
P. Weissmann (*)
University of Minnesota Medical School, Minneapolis, MN, USA
e-mail: weiss017@umn.edu
A. Fornari
Hempstead, NY, USA
Northwell Health Organization, New Hyde Park, NY, USA
e-mail: AFornari@northwell.edu
W. T. Branch Jr.
Division of General Internal Medicine and Geriatrics, Department of Medicine,
Emory University School of Medicine, Atlanta, GA, USA
e-mail: wbranch@emory.edu
© Springer Nature Switzerland AG (outside the USA) 2019 113

https://doi.org/10.1007/978-3-030-12665-0_8
114 P. Weissmann et al.
every diagnosis and every treatment plan begin and end with a conversation
between two invested individuals who exist in a relationship. Although the rela-
tionship is asymmetric, with one party receiving medical care and the other pro-
viding it, patients expect, in fact they demand, to be treated with compassion,
understanding, and respect by their providers. Increasingly patients demand to be
full partners in that relationship and to have their preferences and values as well
as their fears and concerns fully recognized and incorporated as part of that
dyadic relationship [10]. In fact, this desire by patients has been recognized for
quite some time:
The treatment of disease may be entirely impersonal; the care of a patient must be com-
pletely personal. The significance of the intimate personal relationship between physician
and patient cannot be too strongly emphasized … the failure of the young physician to estab-
lish this relationship accounts for much of his ineffectiveness in the care of patients. [11]
When patients consult their healthcare provider, the depth and veracity of the
information they provide in a medical or psychiatric history will largely depend on
the level of comfort they perceive with their provider. Likewise, the degree to which
patients will take seriously and adhere to their providers’ recommendations depends
on the trust that has developed in the relationship.
A large body of literature demonstrates consistently the correlation between the
quality of the relationship on the one hand and diagnostic accuracy and adherence
to treatment on the other [12]. These factors combine to produce better clinical out-
comes when the relationship between patient and provider is respectful and under-
standing and reflects the humanity of each partner [13]. Not only are outcomes
improved, but patients are more satisfied with the process [14]. The same holds true
for their providers who will also be more satisfied at the end of the day [15] as well
as less likely to suffer professional burnout [16] or experience malpractice claims
[17–19].
While patients exhibit their own set of variables that influence outcomes, we
focus here on skills, behaviors, and attitudes that providers bring to an encounter
that enhance the quality of the professional relationship and may contribute to
adherence to the plan. Many individual traits have been shown to influence the qual-
ity of that relationship. These include the clinician’s ability to establish a meaning-
ful focus to an encounter, making sure to include topics not only of interest to their
professional sense of priority but also from the patient’s point of view [20–22].
Others have identified “clues” given by patients to their providers as empathic
opportunities for providers to acknowledge fears or worries or to provide emotional
support [23, 24]. Proxemics, the study of how we communicate, and “body lan-
guage” and other nonverbal features also contribute strongly to the quality of an
encounter [25].
In this chapter, we will focus on these qualities in aggregate, a professional
stance perhaps best summarized in the well-known quote by Peabody:
One of the essential qualities of the clinician is interest in humanity, for the secret of the
care of the patient is in caring for the patient. [11]
8 Humanism and Medical Treatment: Clinicians and Patients Finding Common Ground 115
We call this “humanism.” In a medical context, humanism has been variously

defined, and no single definition of this concept exists upon which there is uniform
agreement. Although authors who write on this subject would undoubtedly agree
with Peabody, each one describes humanistic practice somewhat differently, and we
are aware of several such definitions. Although none of the definitions known to us
is explicitly at odds with any other, they are differently nuanced and consider differ-
ent contexts. We will not consider here the relative value or accuracy of any one
definition. Rather, we appreciate all the authors writing on this subject about which
consensus is still developing. For purposes of this discussion, we define humanistic
medical practice as:
The ability to form, maintain, and appropriately terminate relationships that are compas-
sionate, respectful, and honest and that are sensitive to the autonomy, values, and cultural
backgrounds of patients and their families. [26]
We distinguish humanistic clinical practice, however, from the concept of pro-

fessionalism. While these two concepts doubtlessly have much in common, they are
not synonymous. Professionalism primarily encompasses actions, behavior required
for ethical and competent clinical practice. By contrast, humanism focuses on atti-
tudes or a way of being. In the words of one author, they are linked in that “human-
ism provides the passion that animates authentic professionalism” [27].
What Does Humanism Look Like in Practice?
A healthy physician aged 58, Dr. F. was referred for a biopsy of a new oral lesion
discovered at a routine appointment with his dental hygienist. At the time of biopsy,
the oral pathologist asked Dr. F. for his cell phone number so that the results could
be texted to him the following day. Instead, Dr. F. requested a follow-up appoint-
ment in order to learn the outcome of the biopsy face to face. When asked why, Dr.
F. replied, “I do not like to get bad news on the phone.” Surprised, the pathologist
replied that most people find it more convenient not to have to come in to learn the
results. The following day, Dr. F. arrived for the follow-up visit. Upon arrival, the
oral pathologist asked Dr. F. “How did you know the biopsy would be positive?” Dr.
F. began to tear up and said, “I did not know, but I do now.”
Of course, what you see depends on where you stand, and humanistic practice
is defined differently depending on whether one asks faculty physicians, physi-
cians in training, or patients. For example, faculty physicians who are identified
as role models by their trainees are described as clinicians who overtly demon-
strate respect for their patients. Among other characteristics, they elicit and
accommodate their patients’ preferences and involve them when decisions are
made about medical care. These physicians are further differentiated from their
peers by their use of nonverbal communication—tone of voice, eye contact, and
body posture—and use of language that is individualized and appropriate for any
particular patient [28].
In the same study, patients identified some characteristics that overlap with those
above, such as overt expressions of respect. “The doctor was real nice coming in and
shook my hand and introduced himself, and I really like that, and he asked, you
know, ‘can I sit down?’ and ‘can I touch this?’” Patients also identify features dif-
ferent than those described by trainees, but complementary. These included direct
involvement by the faculty physician in medical care: “he looked at the sores on my
foot himself” and sufficient time spent with the patient “with others, you have to
catch their coattails.” Particularly important to patients was adequacy of explana-
tion. In the words of one: “she was just trying to make me understand what was
wrong … trying to help me … she wasn’t snappy like some doctors.” Good role
models could assess and vary their approach according to each patient’s needs [29].
Adequate professional relationships are possible in some contexts without neces-
sarily invoking humanism. Routine business transactions may be described in this
way. When I (PFW) patronize the hardware store in my neighborhood, as I do fre-
quently, I expect to be treated with courtesy. If I go there with the goal of buying a
new tool to help me complete a home project, I expect my need to be taken seri-
ously, and I am reasonably confident that my goal can be accomplished success-
fully. My experience also tells me that the store personnel may even counsel me to
take an alternative approach to my project that may obviate my need for a purchase.
I know that the store owner and his employees will treat me in this manner because
of their own enlightened self-interest: they want to keep me as a regular customer.
None of these features need be absent from an encounter in a clinical setting.
Indeed, patients expect them to be part of the relationship with their physicians,
nurses, therapists, and other staff members in the clinic or hospital. Recent trends
that characterize the medical encounter primarily as a business transaction, in which
patients are primarily consumers and providers are deliverers of a service, make
exactly that point. However, the humanistic physician or therapist adds further
dimensions to a medical encounter that cannot be adequately described by such a
transactional model. Medical care is decidedly more complex and nuanced than
purchasing a service, most obviously because patients feel vulnerable and often
frightened. A professional places the needs of patients, including their emotional
needs, above his own needs. From the beginning of an encounter, providers help
their patients develop the narrative of the illness for which they are seeking consul-
tation. Providers do this not so much by asking questions as by facilitating the
development of the illness narrative. Properly rendered, this narrative is then placed
within the context of the patient’s life and circumstances. With such fully nuanced
information, skilled psychiatric interviewers can understand their patients’ point of
view, including their fears, worries, hopes, and expectations of the psychiatric rela-
tionship. Only within such a framework can a provider acknowledge and empathize
with their patient’s preferences and choices as well as what options the patient con-
siders realistic within the full context of their life. Only then can the provider respect
their patient’s autonomy. While a provider may accept—perhaps begrudgingly—a
patient’s decision about treatment, it is only in a humanistic context that the pro-
vider can fully respect that decision with empathic understanding.
Such a relationship cannot be expected to exist on first meeting. Patients who are
adults can be expected to bring their experiences from prior medical encounters, or
their experience of medical care with family and loved ones, as a backdrop that
colors subsequent interactions with medical providers. Those experiences may be
positive and promote quick trust-building with the provider. They may also be nega-
tive, in which case patients may enter the relationship with skepticism, fear, or other
emotions that make the grounding of a new relationship more challenging, both in
terms of personal information that patients reveal about themselves and their medi-
cal concerns as well as their receptivity to their providers’ diagnostic impressions
and treatment recommendations. In this context, it is incumbent on the physicians
to make themselves aware of such prior experiences. The provider thereby not only
contributes to the patients’ feelings of being understood, but the provider also
becomes a more effective clinician [30].
Similarly, the provider brings prior experiences and inevitable biases into the
consultation. In the humanistic context, providers should be aware of their uncon-
scious biases and seek to bring them into consciousness and awareness. All indi-
viduals can assume that they have acquired biases that shade, positively or negatively,
their regard and level of empathy for patients is unique. To be fully humanistic
throughout their careers, clinicians should be as fully self-aware of their unique
biases as possible [31].
This begs the question: how can one become aware of biases that are implicit and
subconscious? We know of several possible ways. An example is the Harvard
Implicit Association Test, a well-known and validated tool that can be used pri-
vately, at home or at work, and without cost [32]. Participants can select from sev-
eral variables—race, sexual orientation, weight, and others—and be alerted to
implicit bias for or against any one of the categories that are assessed. Reflection on
the test results may enhance the clinician’s self-awareness [33–43].
Balint groups have been used by clinicians to explore their countertransference
toward patients, particularly those that elicit strong emotional responses. Personal
awareness activities, such as those sponsored by the Academy on Communication
in Health Care (ACH), can also be used for such purposes. Group settings allow
participants to compare their biases and receive feedback from other group mem-
bers, thereby making possible a calibration of responses [31, 44].
Shared Decision-Making
Although not synonymous with humanistic care, shared decision-making (SDM)

has been described as a method of arriving at therapeutic decisions that is com-
pletely compatible with and perhaps an essential element of humanistic practice
[45–47]. SDM has been defined as:
An approach where clinicians and patients share the best available evidence when faced
with the task of making decisions, and where patients are supported to consider options, to
achieve informed preferences. [48–50]
SDM incorporates patients’ values and preferences about healthcare choices,

specifically relevant to treatment options. The sharing of knowledge between patient
and healthcare provider supports patient-centered care, increases the satisfaction of
patients and professionals, and most importantly improves quality of life and clini-
cal outcomes. This leads to a stronger clinician-patient relationship, thereby enhanc-
ing adherence.
A model of SDM that encompasses the humanistic approach to patient care
includes preparing the patient to discuss treatment options and goals of care, pre-
senting options, and supporting the patient in weighing the alternatives. This results
in a conversation that summarizes treatment options, focuses on patient preferences,
and concludes with a decision on a treatment plan with the patient or their represen-
tative [49]. SDM is a process of collaborative deliberation that ideally concludes
with a decision in which patients and professionals share their view. SDM can be
time-consuming. To be generalizable to clinical care settings with complex cases,
such as in the psychiatric setting, requires a culture of care in which person-centered
care is valued and supported by clinical leadership and clinicians.
SDM is particularly germane to considerations here because it has been shown to
increase adherence to medical recommendations, both pharmacological and behav-
ioral [45, 50–54]. Evidence from primary care, subspecialty clinics, as well as men-
tal health and psychiatry demonstrates improved satisfaction and outcomes when
SDM is employed [54–56]. SDM differs from the older model of “compliance,” or
clinician-based care, in which patients’ ideas and values, essentially their autonomy,
are subordinated to the clinician’s determination of the most desirable therapeutic
plan. In a humanistic context, clinicians using SDM value equally the patient’s ideas
and values with their own. While the clinician may not agree with their patient’s
position, they strive to explore and understand it while demonstrating empathy and
respect. After such a process, the clinician and patient generally agree on the course
of action and, if not, can negotiate a realistic and beneficial compromise. The clini-
cian makes the utmost effort to maintain a therapeutic relationship with the patient,
even if their therapeutic recommendations are rejected, in full or in part. This level
of respect will instill a trusting relationship between the patient and provider and
contribute to adherence.
Some authors suggest that SDM is more germane to care of chronic problems
over long periods of time, years to decades [57]. Almost the entirety of the literature
available on the subject derives from subacute and chronic care settings. Although
its utility in acute care when compared directly to chronic care has not been studied,
this strategy carries with it significant face validity. In urgent, emergent, or time-
critical situations, research shows that frequently patients cannot or do not want to
share the responsibility of making decisions [58]. Often, critical medical situations
require rapid processing of very complicated information at a time when patients
and families are so distressed they are unable to process it adequately, thereby mag-
nifying the power differential between providers and their patients.
The elements of SDM have been described variously, but in general there is
broad consensus that it begins with the ethics of informed consent [49]. Before
deciding anything, patients must be adequately informed, in language that allows
them to understand to the best of their ability, about the problem and treatments
under consideration. Since transmission of information does not by itself guarantee
reception or understanding, the clinician must verify the patient’s understanding
and acceptance. The information provided to patients must include the nature of the
medical problem being considered and its prognosis. For there to be a decision
about treatment, patients should understand the reasonable options for treatment,
including no treatment at all. They should know, to whatever extent they desire, the
relative advantages and drawbacks to each of those treatments.
Second, patients must be given an opportunity to participate in the decision-
making. The clinician could introduce the subject by saying something like “Would
you like me to describe the options for you?” By implication patients will require
some time to consider their options, and it may not be reasonable to expect a mutual
decision within the time frame of an outpatient office visit. If more time is required,
then the choice should be deferred, although any disadvantages to delay should be
disclosed. If barriers exist, they should be accommodated or overcome to the great-
est degree possible. For example, if a patient’s proficiency in English is not ade-
quately fluent to ensure sufficient comprehension of the discussion, then decisions
should be deferred until adequate translation becomes available.
But giving options, like offerings on a menu in a restaurant, is insufficient.
Receiving a list of potential therapies cannot be considered humanistic, nor is it
really SDM, if the patient is abandoned to make her own decision without guidance,
support, and empathy from her provider. What support patients require will vary
widely, depending on the personal preferences of any given patient as well as the
circumstances under consideration. If patients require further information, resources
should be provided, or patients should be referred to reliable references. Some lit-
erature supports the use of visual displays, if available and appropriate, or other
decision aids [59–61].
Perhaps most important are expressions of empathy, such as a compassionate
acknowledgment that the choice may be difficult. Clinicians should anticipate an
emotional response from their patients and should inquire about it. A simple ques-
tion such as “How do you feel about those options?” may elicit useful information
to help the clinician understand the ultimate choice the patient prefers. Even without
additional information, patients are more satisfied and feel more supported when
they know their emotional reactions are recognized and respected. Such recognition
may help them follow through with the agreed-upon treatment [62].
Developing Humanism in Clinicians

I am always ready to learn, although I do not always like being taught. [63] – Winston
Churchill
The complexity of psychiatric cases and the actual process of care delivery using
collaborative deliberation with patients require attention to professional develop-
ment of clinicians’ communication and interpersonal skills specific to engaging
patients in a person-centered dialogue and eliciting patients’ values and goals. How
to develop and nurture these clinical skills is a challenge in the current clinical envi-
ronment. In the clinical setting, the competing demands for time, patient care reve-
nue, and documentation pose barriers to clinicians wishing to form a community in
which they can teach and support each other.
Literature suggests that significant numbers of medical students do not regard
their faculty as humanistic caregivers with patients or as good role models [64].
Unfortunately, this belief increases as students advance through their academic
requirements [65]. On the other hand, studies also suggest that this situation is mod-
ifiable, and ample evidence demonstrates that humanistic attitudes and practices can
be fostered and learned [26, 44, 66, 67]. Medical educators may mistakenly believe
that humanistic attributes that ground attitudes and behavior are inherent traits, not
modifiable, as students go through medical school, enter residency, and progress
through years of clinical practice [68]. Some suggest that humanistic attributes
erode during clinical training [69–71].
We are more hopeful, but we acknowledge the sentiments expressed by Winston
Churchill in the quotation above. Clinical teachers and mentors are invaluable, pre-
cisely because they can create the conditions in which humanistic practice can be
learned [28, 72]. The most commonly used method over decades and centuries has
been active role modeling [73–79]. We thoroughly support this practice, and learn-
ers report disappointment when they identify their faculty as poor role models [65].
However, role modeling by itself may not be sufficient for learners to develop the
skills and attitudes required for humanistic practice [71].
We have proposed additional tools that can be adopted in everyday clinical teach-
ing to foster a climate of humanism [73]. These are summarized in Tables 8.1 and
8.2 by teaching strategies and educational content, respectively. Beginning with the
creation of a humanistic learning climate, the teacher may enhance her influence as
a role model by taking a personal interest in her learners, for example, taking time
to find out where they are from and what motivated them personally to study medi-
cine. When the learners feel personally supported in their roles, they are treated as
we hope they will treat their patients.
Humanistically oriented faculty will watch for learning opportunities that arise
spontaneously in the clinical work of an academic learning group, particularly those
that involve important or challenging patient-physician interactions. While it is
important to discuss the fine points of diagnostic evaluation and evidence support-
ing one treatment over another, it is equally important to attend to the psychosocial
domain as well. If residents have a difficult encounter with a patient, it helps to
debrief the situation with them and turn it into a learning opportunity. When a dif-
ficult situation can be anticipated, such as delivery of sensitive news, skilled faculty
will forecast the situation with their learners and speculate on strategies to be used.
The strategies when used are then transparent to the learners. We have termed such
an activity “activated role modeling” [73].
We also propose a model of professional development focused on building com-
munities of practice (CoP) through which a culture of humanistic practice can be
established, nurtured, and maintained [80]. CoPs have three elements: relationships
Table 8.1 Educational strategies

Establish a climate of humanism
Involve the learners in the process of clarifying the mission, goals, and ground rules for the
clinical experience that embody humanistic values
Encourage presentations that integrate relevant psychosocial as well as biomedical information
and management strategies
Move clinical round discussions to the bedside (in most cases) and encourage presentations
that recognize the presence of the patient
Get to know learners as persons and address their individual and human needs
Promote a cooperative, respectful, and supportive, as opposed to a competitive, learning
environment, where team members are encouraged to admit their mistakes and to
communicate rather than hide their learning needs
Recognize and use seminal events
Giving bad news: recognizing, eliciting, clarifying, and dealing with feelings, concerns, or
expectations. Focusing attention on the use of excellent communication skills or the use of
dehumanizing language. Assisting a patient at a time of transition
Role model
Demonstrate desirable skills or behaviors
Comment on what you have done
Explain what you have done
Actively engage the learner
Involve learners in tasks that require humanistic skills, such as eliciting the concerns of
patients
Ask questions and encourage learners to reflect on and to discuss what they have done or on
what they have observed
Provide feedback to learners on what they have done
Engage the learners in projects that are likely to include the human dimensions of care, such as
defining the team’s mission
Be practical and relevant
Respect the limitations of time and resources
Make a humanistic approach integral and relevant to patient care
Focus on humanistic behaviors that are likely to improve outcomes
Focus on communication skills and management strategies that are feasible for the learner and
are generally applicable
Use ongoing and multiple strategies
Reinforce and build on previous learning
Address differences in individual learning preferences
among group members, common passions, and sharing of resources when working
toward a common goal of person-centered care [81]. The theoretical model devel-
oped by Branch describes such an approach to professional development, the core
of which is a humanistic attitude [82]. In addition, Branch’s seminal work in faculty
development with physicians supports development of CoPs longitudinally and
incorporates his theoretical framework specific to educational practices [26]. This
work was duplicated by Fornari and successfully applied to mentoring as a human-
istic skill to be developed and practiced [83]. Precise curricular descriptions go
beyond the scope of this chapter, but generally these learning opportunities require
Table 8.2 Educational content [31, 44, 86, 87]

Social amenities
Greeting the patient
Explaining roles
Introducing team members
Asking patient’s permission when appropriate
Attending to the patient’s privacy
Verbal communication skills
Gathering information using open-ended and closed questions, active listening, and obtaining
psychosocial information
Eliciting, clarifying, and attending to patients’ emotions, beliefs, concerns, and expectations
Providing patient education and facilitating behavioral change
Timing
Tone and pace of voice
Nonverbal communication skills
Position, such as maintaining appropriate eye contact, placing oneself at the same level as
patient, and including patient in circle during rounds
Facial expressions
Touch
Observational skills
Patient’s verbal and nonverbal communications and communication styles
Patient’s dress and surroundings
Patient’s family and social interactions
Colleague’s communication and decision-making skills
Humanistic care
Attending to the patient with respect as a unique individual
Providing care in the context of the patient’s values, beliefs, history, needs, abilities, culture,
and social network
Providing care in the context of what is meaningful for the patient
Giving bad news
Providing humane care at the time of transitions, such as loss of functional status
Providing care at the end of life
Relieving suffering
Being honest and genuine on how one portrays oneself to the patient
Self-awareness
Being aware of the emotions that are evoked in the context of a patient interaction
Being aware of the communication skills that one has used
Being aware of one’s values, beliefs, history, needs, and culture
Being aware of how the above self-awareness points affect one’s interactions with and care of
the patient
Using this information to improve one’s care of the patient and achieve mutual benefit
small groups led by skilled facilitators. Sessions should be conducted interactively,

using principles of adult learning theory that engage participants in meaningful
activities that they find relevant and useful. Most importantly, these curricula are
spread, with an intact and optimally formed group, over a period of at least
10–12 months so that participants can use and reflect on what they are learning
[26, 67, 82, 84]. We propose that this model of professional development can be
replicated so that faculty can learn and practice skills required for role modeling
SDM. Variations of the model are also applicable to medical student and residency
education [67, 85]. Patients will thereby become involved in creating treatment
plans in which they are willing and able to participate actively [52, 54].
Summary
Humanism can be defined in the context of clinical medicine as an attitude that is

essential to the performance of clinicians, a quality that “provides the passion that
animates authentic professionalism” [27]. Humanistic practice can be identified in
practice by patients, learners, and colleagues. As such, it can be studied in a schol-
arly fashion. More importantly, it is a quality than can be taught and learned using
methods that have been described and validated. These methods can be employed
when developing treatment plans with patients that will result in improved adher-
ence. Shared decision-making is a skill that can be used to achieve a positive out-
come for both the clinician and the patient and contribute to adherence of the
treatment plan.
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Narrative Medicine and the Treatment-
Resistant Patient 9
Eric R. Marcus and Rita Charon
This chapter discusses the use of narrative medicine techniques for treatment-
resistant psychiatric patients, of which the nonadherent patient is one type. It will
list the different diagnostic issues in the treatment-resistant patient. It will describe
a common feature of his/her mental organization. It will outline and illustrate a nar-
rative medicine approach to treatment addressing that common feature. It will also
discuss the relationship issues in such treatments classically called transference and
countertransference. This chapter will then describe narrative medicine and some of
its applicability to psychiatry.
Differential Diagnosis of the Treatment-Resistant Patient
Nonadherent patients are a subset of the treatment-resistant group. These are

patients whose illnesses are difficult to treat. They are often labeled treatment fail-
ures. But failure can only be so labeled when every avenue has been tried unsuc-
cessfully. In treating this group, one needs to ask why is it that treatment is difficult
or a failure. Answering that question takes a giant step toward being able to under-
stand how to successfully treat the patient. It is only when we know more about the
E. R. Marcus (*)
Columbia University College of Physicians and Surgeons, Supervising and Training Analyst,
Columbia University Center for Psychoanalytic Training and Research, New York, NY, USA
e-mail: Erm4@cumc.columbia.edu
R. Charon
Medical Humanities and Ethics and of Medicine at the Columbia University Medical Center,
New York, NY, USA
Department of Medical Humanities and Ethics, Columbia University College of Physicians
and Surgeons, New York, NY, USA
e-mail: Rac5@cumc.columbia.edu

https://doi.org/10.1007/978-3-030-12665-0_9
130 E. R. Marcus and R. Charon
problem that we can then build a more accurate treatment plan and perhaps turn
failure into success.
In a small observational study done years ago [1] on a group of treatment-resistant
psychiatric inpatients, about one third were found to have the wrong diagnosis of
their major illness. About one third of the individuals were found to have inadequate
medication treatment, either of type or dose. One third of the subjects were found to
have a second complicating diagnosis of personality disorder. When these factors
were addressed, many of the patients demonstrated dramatic improvement.
The most common illness diagnosis in the group was mood disorder, either
severe depression or bipolar spectrum. The most common personality disorders
were borderline or histrionic. In outpatient settings, narcissistic is as common as
borderline or histrionic. This combination of both mood disorders and personality
disorders is the most common in the treatment-resistant group and provides the big-
gest challenge to the treatment of these patients [2].
These patients’ mood intensity and affective dyscontrol intensify their personality
dynamics and aggression and decrease frustration tolerance. This results in attacks
on the people in their lives, the self and object representations in their mind, the
therapist, and the treatment. Intensity and personality dynamics create difficulties in
integrating different feelings about self and others and different actions into reality
and reality reactions back, both of which affect the therapist and the treatment.
There are other illnesses that these difficult individuals struggle with. The most
common examples are attention deficit disorder, both hyperactive and inattentive. In
addition, there are certain types of learning disabilities which involve language pro-
cessing or executive function and are common as well. These conditions slant devel-
opment because certain aspects of cognitive function are troubled, delayed, and
become infected by low self-esteem, damaged by life difficulties and failures due to
the condition which most often goes undiagnosed and therefore untreated. These
individuals get very different feedback from themselves and from life because of
their erratic function. They can sometimes seem fine or even gifted but at other
times carelessly inadequate. Due to the erratic performance, they are often seen as
lazy or undisciplined. If they have trouble organizing and either do not know it or
have given up, they are likely to be seen as at fault. Logical secondary processes,
coherence, prosody, syntax, and efficient progress to the main point may all be
affected. In these patients, growth and development is not linearly progressive.
Their personality development is not coherent. In the severe forms, it has a mosaic
structure.
In the difficult to treat patients with bodily concerns and psychosomatic illness,
the disassociation is between the experience of life and emotional problems and the
experience of the body. Emotional reactions are felt in a condensed and inchoate
way through sensory physiology of the body. Due to the fact that these conditions
often involve emotional traumas and conflicts about attachment, the attachment to
the caregiver may be chaotic, ambivalent, fearful, denigrating, or paranoid.
The treatment-resistant patient is a problem that transcends diagnostic c ategories.
Any diagnostic category or combination could be treatment resistant. The above
9 Narrative Medicine and the Treatment-Resistant Patient 131
descriptions list the more common ones. One of the goals of treatment with this
group of patients is to clarify the diagnosis.
The feature of mental structure that all these patients have in common is the
failure to integrate their self-story. This is because either the synthetic function of
the ego is overwhelmed by affect intensity or because of inborn errors in the execu-
tive function capacity of the brain. In either situation, the executive function of
synthesis and of affect modulation and control is damaged. This leads to a dissocia-
tive structure in which opposite affect experiences are separated, conflicted ele-
ments are not united, causality is disrupted, and sequence of events is intact, but
sequence of causality and of development is not. This causes a chaotic organization
of their mental structure. Secondary processes of logic and tertiary processes of ego
synthesis are infiltrated with emotional thinking. In the most severely affected, the
real object and the object in reality are captured by emotional representations and
may press and compromise reality testing [3].
With these patients, the issue of treatment failure may be more than one of their
mental structures. Lifelong psychiatric illnesses may have taken a toll on self-
esteem and ego organizing abilities and therefore on the ability to adapt to life. This
can cause repeated life failures and stalemates and add to self-esteem burden. It also
more profoundly causes personality growth stalemates adding to the repeating
cycles of failure and to repetition compulsion. It is no surprise that this will impact
their response to treatment. The stalemate and failure experience is a story in and of
itself. There is a particular unconscious failure fantasy that expresses itself in behav-
ior toward the helper. Treatment-resistant patients often have transference difficul-
ties to helpers and have experiences that are paranoid, demeaning, anxious, and
hostile. Nonadherence is the enactment of an emotional self in place of a real self
and treats the helper and the treatment process itself as a noxious foreign body.
Narrative Medicine
Narrative medicine is a technique of engaging with patients and listening to their

narrative [4]. Each patient arrives with what physicians call a history. Clinicians
often focus on the illness history. But there is also the life history and the emotional
history. The life history is the history of events quite apart from the illness, includ-
ing the stories of growing up, family, schooling, relationships, work, and love. The
emotional history is the history of the effects of events and of the life and illness
effects on the emotional growth and development of attitudes to self and others.
A story is a composite, a synthesis, of events, causes, effects, and results. It is a
developmental narrative that has several histories together comprising a story.
The coherent integration of the three histories is the person’s story or the self-
story. It is this that gives voice to their sentient self, provides coherence to their self
in their lives, partially grows out of and guides their interactions with others, articu-
lates their values and assumptions about life, and provides the entrée to their deepest
wishes and fears.
The narrative medicine clinician applies knowledge of narrative structure to

medical thinking and medical care. The patient tells the clinician the story about the
events and situations that contribute to the illness. This is the narrating stage of their
encounter, in which a combination of words, gestures, expressions, and silences is
available to the listening clinician.
The clinician absorbs what the patient tells, using interpretive acts to make sense,
uniquely, of what is heard. Narrative theory emphasizes that the “sense-making”
aspect of narrating relies on both the teller and the listener to, together, co-construct
the meaning of the tale [5].
Then the clinician writes down the story that is heard in some form, in a written
chart note, in a history of present illness (HPI) in the electronic record, in the ana-
lytic notebook, or sometimes in the form of personal account written privately. This
written text is the narrative that confers form on what has been experienced and
expressed by the patient and heard by the clinician. Not merely a transcript of the
patient’s actual words, the narrative is filtered through the listener’s chosen form of
making sense of language, be it psychoanalytic frameworks, psychological theories,
pathophysiological diagnostic categories, or literary/aesthetic concepts of how
words achieve meaning. It is in studying the written narrative that the clinician
comes to understand what he or she thinks and knows [6].
The written narrative endows the story with a particular temporal scaffolding,
adopts a particular genre, is located within particular spaces, and contains particular
metaphors or images. All these literary aspects of the patient’s narrating and the writ-
er’s narrative are clues to its overall meaning and direction. The narrative has a plot,
characters, and a narrative strategy. The characters have motives, goals, relationships,
and conflicts. They have fears, hopes, and desires that combine to produce particular
emotional content and process. There are conflicts and reversals, triumphs and fail-
ures, actors and those acted upon. There may be heroes and villains, much like in fairy
tales or fiction. Most stories have narrative unity or coherence whereby one can iden-
tify separate parts of the story as belonging to the story as a whole. Other stories, like
postmodern or surreal stories, are chaotic and fragmented, refusing to “add up to” a
recognizable whole; this refusal to cohere becomes the hallmark of the tale.
The account as given by the patient and heard and written by the listening clini-
cian can synthesize the many (and often contradictory) dimensions of the story. The
integration, if achieved, describes change and causality, growth and development, or
lack thereof. Stories told, heard, and written integrate facts with meaning. Stories of
illness reveal the illness-host relationship. They link the facts of the illness, includ-
ing its effects, with the emotional meaning of the illness and its effects, as well as
the adaptations to the illness and their effects.
Using Narrative Medicine in Practice
Narrative medicine clinicians write complex narratives, realizing that one both
writes and reads what one has written for discovery [7]. Some narrative clinicians
will show what they have written to the patient to initiate a collaborative writing
practice in which both clinician and patient write their way toward discovery [8].
However, even without the rigorous narrative medicine methods of collaborative
writing, a clinical treatment can be enriched by rigorous attention to the literary
qualities of what patients tell about their illnesses and the literary qualities of what
the clinician finds himself or herself writing about the patient.
Perhaps especially in the treatment-resistant patient, the initiating process of nar-
rating a story seems to fail. But, since failure is a story, there is always the opportu-
nity to generate a narrative account of the patient’s situation. If the preconscious and
unconscious aspects of the story are included, the story may regain coherence of
meaning to reveal the story of the meaning of failed treatment. We might call this
narrative psychiatry or narrative psychotherapy which seeks the life story as a path
to the emotional story and therefore to an understanding of meaning and signifi-
cance [9, 10].
In addition to conventional clinical record-keeping in paper or electronic charts,
narrative medicine techniques involve personal writing by the clinician and often by
the patient, close listening to the forms used by the patient in telling his or her story,
and critical attention to motivation, fears, adaptations, and attitudes. The narrative
medicine assumption is that every patient has a story, of themselves and their lives,
and that clinicians can use these stories for more accurate and more finely attuned
diagnosis and empathic care.
The treatment-resistant story, when told whole, can be revelatory of the illness
diagnosis, of the effect of the illness on the self, of the effect of the illness on the
life developmental trajectory, and of the ability of caregivers to help. Eliciting this
story provides crucial information to both the caregiver and the patient. It may
help integrate aspects of self-experience and illness experience that have not been
conscious. The elicitation of this story in treatment may be the first time the
patient is aware of the full effects of the illness on themselves, on their behavior,
on their caregivers, and on their lives. The reasons for a failure to tell, integrate,
and understand a helpful self-story can be found in the effects of psychiatric ill-
ness on the story-building and integrating function of the mind. Patients’ narra-
tives of their story will reveal the integration difficulties and content-specific
aspects of psychiatric illness and may shed light on the reasons for their failure to
comply with treatment.
Narcissistic patients may be offended by treatment because it attacks their nar-
cissistic grandiosity. Infantile patients may be offended by treatment because it
attacks their anxious neediness demands. In both cases, aggression at the caretaker
sabotages assertive battling of their illness. An abdication of responsibility for
change is manifest: others should do the work to change their lives rather than the
patients changing their lives and their attitude to life. These attitudes are self-
defeating in life and in treatment. The result is a self-failure fantasy which is the
story of their failure events, dramatis personae, and attempts to assign blame. This
story is expressed in attitudes, interpersonal behaviors, hostility, suspicions, assump-
tions of futility, and failures of self-motivation. These are manifestations of the
organizing failure fantasy, partly or fully unconscious, about the self. This failure
fantasy attacks caregivers.
These patients may not take their medications because of minor side effects and
may not report this. They may resist self-understanding and constructive life change
particularly with real relationships. This resistance to treatment is articulated in
their emotional story. When that story deadlocks the relationship to their own
growth and development, both as people and in their relationships to others and to
their life trajectory, then a degree of hopelessness may enter that is always sad and
sometimes dangerous.
These patients fail to put together their illness history, life history, and emo-
tional history into a single coherent story that compromises adaptations to all three.
This failure to integrate their stories may be an attitudinal attack upon the integrat-
ing faculty of the mind that is an aspect of ego function. What one sees in the mani-
fest psychopathology is a dissociation among the three histories and also among
their elements of wishes and fears, love and hate, sex and love, fear and need,
attachment and abandonment, and aggression and need. These dissociations, in
which both opposing trends are conscious but enacted at different times, are obvi-
ous examples.
Treatment
These patients often need both medication and psychotherapy. If it is to be a split

treatment, these patients need close coordination between therapist and prescriber
in order to medicate ego dysfunction and not just behavior or obvious symptoms.
Because the ego dysfunction is a functional problem, its subtleties are best seen in
the psychotherapy which is longer, more intense, more frequent, and more of a chal-
lenge to organizational functions of the ego than is a brief visit for medication
adjustment.
The goal of pharmacological treatment is to accurately prescribe the medication
that will help their illness. The medication must be accurately targeted for the illness
diagnosis and, most important, its manifestations in ego function. For mood disor-
ders, it is antidepressants, mood stabilizers, and adjunct antipsychotics for those
patients who are delusional. Thymoleptic medications target mood and its effect on
ego modulation ability for affect intensity, affect-behavior boundary, and affect
boundary between object representation and real object and between self-
representation and real self-experience. In the delusional patient, the object in real-
ity or the self in reality is captured. The common problems are to overlook delusional
components of severe depression or to overlook bipolar grandiose, euphoric, or irri-
table paranoid elements.
The psychotherapy is more difficult [11]. This is because of concomitant diagno-
ses that in various ways attack the capacity for synthesis and therefore derail under-
standing, use, and application of psychotherapy insight. There is the additional
problem of attacks on the therapist and the treatment. These issues must be accu-
rately diagnosed so that they can be addressed. Attacks on the treatment or therapist
must be confronted. Cognitive difficulties must be rehabilitated either within the
psychotherapy or as part of a separate cognitive rehabilitation.
The Use of Narrative Medicine in Psychotherapy
All psychotherapy tries to understand the patient’s experience albeit from different
points of view, with different goals, with different techniques, with different intensi-
ties. All psychotherapies use a growing knowledge of the patient’s emotional life
and emotional attitudinal tendencies. Psychodynamic psychotherapy focuses very
specifically on the emotional life and its contents and organization. Inherent is the
idea of a self-story also called fantasy, also called the core personality fantasy. It is
a mostly pre- and unconscious story about one’s self and others classically called an
object relations fantasy. That story narrates the drama of wishes and fears, conflicts,
and compromises in an imaginative narrative which is the mixture of reality and
fantasy that is called psychic reality. In that story are the themes and attitudes that
organize object relations and self-experience. It is this which psychodynamic ther-
apy seeks to elicit. This is for two reasons. One is for use in adaptation to reality, and
the other is for adaptation to one’s own emotional life. Both require achievement of
coherence, without which the story lacks the possibility of further compromise in a
good enough resolution that allows for the resumption of growth and development
along one’s life trajectory to one’s emotional maturity.
Narrative medicine, like a psychodynamic psychotherapy, actively seeks to
assemble this core personality story. Narrative medicine does this as a stated goal of
the treatment. Therapist and patient actively work together to assemble the story
both from the patient’s history and from the patient’s feelings. A coherent narrative
that reveals values and meanings of the patient’s lived experience emerges through
the telling and the writing. Attention is paid to critical reading of and listening to the
patient’s narrative. Attention is paid to the subtleties of the story with their implica-
tions and unspoken assumptions. Speaking it out consciously, manifestly, and
coherently is the therapeutic product. The putting together in the telling and writing
to the therapist witness is the crucial active work.
Technique
The problem comes when in exploring the story behind the story, some of the mate-
rial is unconscious. Here, techniques from psychoanalysis applied to psychody-
namic therapy can help. Associational memory, conscious ruminative fantasy,
dreams, enactments, transference, and countertransference are all ways in which the
more unconscious aspects of the story are expressed.
The therapist is alert to these elements and points them out to the patient to
inquire about their meaning. Soon, these islands of meaning, the patient’s com-
plaints, the patient’s behavior, the transference, and the countertransference, begin
to overlap and cohere. The common content can be abstracted to the themes of the
content and the processes that organize these themes. Now the story is assembling
attitudinal and thematic coherence. At some point, this is clear enough to cohere
into a story. This is stated to the patient, and one listens then for the elaborations,
corrections, emendations, and new affect experiences that will begin to sequence
the narration both forward and backward. Now the story has prediction and retrodic-
tion. For the treatment resistant, it will be a resistance to treatment story, a failure
story, a self-esteem story, a trauma story, and a deprivation story.
Only when this is heard, only when this is empathized with, and only when the
real aspects are separated from the emotional reactions, only then can some more
adaptive relationship appear. This healthier relationship will relight the hope candle.
This must first be lit in the therapist and secondarily in the patient although the
danger of the therapist lighting it in themselves first is that the patient will be
tempted to blow it out. This should be commented on should it occur. It would be a
powerful statement of the very active process of destruction that can occur in the
treatment resistant, including the nonadherent treatment-refusing patient.
The patient is a human being who comes to another with suffering and a problem
searching for help from the therapist. The helper is someone chosen by the sufferer
to help, through witness and through expertise, either of life experience or of train-
ing or both. The therapeutic alliance is that term given to the relationship whereby
both agree to work together on the suffering one’s problems. One can easily observe
when that assumed agreement is lacking. That is the marker often of the personality
disorder. The danger is that it is not a personality disorder but rather a difficult-to-
treat mood disorder about which the patient has given up hope.
Clinical Illustration
Mr. A was a 25-year-old man who was alive by accident. A suicide attempt should
have been fatal, but luck arrived in the form of an accidental encounter with a rescu-
ing stranger who found the unconscious patient. His parents had him committed for
a long-term psychiatric hospitalization in the hopes of saving him although several
psychiatric experts had agreed it was hopeless. This prognosis allowed the profes-
sionals on the unit a relief of a burden that was helpful to the treatment. If nothing
could be done, if the patient was doomed, then a certain type of onerous responsibil-
ity on the helper was relieved, and a certain aspect of the doomsday self-story was
affirmed without need for immediate conclusionary proof. The life story was one of
physical disability and deformity, in a wheelchair since early childhood. This inter-
fered with self- esteem which would have been a problem anyway in the highly
successful family. The self-story was fairly easily elicited by simply inquiring, not
about the history, but about this story.
The therapist said please tell me your story. When the patient said what story,
the therapist said the story of your life, the story of your feelings, the story of how
you became suicidal, the story of the suicide, the story as you see it now. The
patient replied that he had no story. That, said the therapist, is a profound story.
Please tell me.
He replied that he was a failure. He was a failure even at killing himself but that
he had not yet given up. The therapist said that failure is a story and that he had not
yet given up on killing himself made it a powerful story. He said if he could not kill
his body, he certainly could kill his feelings, his relationships, his meaning. The
therapist said that she could understand how killing all of this could make him see
that he had killed the story itself.
The patient then asked if the therapist was trying to help him with this method.
The therapist said that it might be possible to understand his determination to kill
himself as a certain type of death story, of ultimate fatalism. The patient asked if that
was supposed to help. The therapist replied wisely that she did not know if any help
was possible because she did not know what was really wrong and also, more
importantly, she understood that the patient did not want help and might actively
refuse. The patient said this was correct. The therapist said she was curious anyway
and would be glad to hear anything he had to say about the present state he was in
and would meet regularly with him to do this. He said he had no objection to doing
this as long as she understood that it was not therapy. She asked why he would do
this then. He said as a scientific experiment to satisfy your curiosity. She said that
perhaps he had some scientific curiosity himself. He smiled morbidly and said
perhaps.
He then asked where would they start, and she said they already had started
because perhaps he had already described his present state of self as a scientific
experiment in the lived state of fatalism and death seeking, revealing itself in his
whole gaze to the scientific curiosity of the therapist. He smiled more widely and
seems pleased with this formulation. Note that the cold grandiosity of mastery over
death anxiety, superior to the therapist, presumably a normal human being with
death anxiety, was left unstated at the moment lest it challenge his self-esteem by
implying that the therapist was unintimidated by this dynamic.
The story progressed over the next weeks dealing first with the surface of the
scientific experiment, its parameters, its implications, and the preferred object of
curiosity which for him at first was how and why his suicide attempts failed, so that
he might do it better the next and hopefully final time. This was an excellent begin-
ning because it allowed a turn from behavior to motivation and to possible resis-
tance. The therapist was then able to say yes, how is it that you decided to kill
yourself and how is it you could not arrange it so that it was instantaneous and
complete. The patient winced and said obviously he was a failure. She said that
failure was now being used not to describe an event but a self-state. She wondered
if that failure self-state preceded the suicide attempts. He nodded and said yes, all
his life.
The therapist has now succeeded in turning two corners. One was the focus on
failure in the suicide attempts which began to underline a sense of resistance to
suicide that might lead away from the doomsday scenario if it was not too quickly
humiliating. The second was the focus on the patient’s state of mind and suicidal
self-feelings which the suicidal behavior represented but to which it was not
equivalent.
The therapist felt an overwhelming sense of sadness but the patient indicated no
such emotion. The therapist said it sounded like a sad story. He replied sad to others,
not to him, perhaps sad in his past but not now. Now he was way beyond sadness.
She asked what he did feel. He said he had arrived at his suicide at the point of cold
determination. She asked the motivation for his cold determination suicide, now
dropping the attempt modifier and thereby acknowledging that he was alive by acci-
dent. He said the motivation was to end a useless life. She said that useless was for
him a descriptive label but for her a judgment. A judgment of himself upon himself.
He agreed. This allowed her to wonder whether the cold determination was to kill
himself with the motivation of judgmental hatred and perhaps disgust and therefore
his suicide was a type of murder, an execution.
The patient seemed pleased with this and nodded. She asked what was it like
when the fear of death was no longer present and replaced by a determination to kill.
He said it felt strong and good and that he felt triumphant and at peace. She asked if
he had always felt weak. He said cowardly, especially when with others who were
not disabled. Asked how so he replied that he was cowardly in not confronting what
he felt was their contempt of him. She asked if there were episodes that illustrated,
and he remembered a number from childhood demonstrating the cruelty of latency
age children, especially the athletic boys who taunted him and gave him a cruel
nickname. For the first time, she decided to label his affect and said, generally, that
it must have hurt. He acknowledged the general label hurt but did not elaborate.
Nonetheless, this began to cross the Rubicon of tough crust presentation of self into
painful feelings of shame and rage at his body self, taking the tormenters’ bodies
and attitudes to their body selves as his unachievable ego ideal. His compensatory
ego ideal was to be fearless in confronting the death of the body, a bravery that he
imagined his tormentors would not have. For even the physically fit and athletically
accomplished tremble before the grim reaper. Perhaps them especially so. He would
prove that he was superior in his bravery, able himself to murder his body self which
would frighten and revolt them when they heard about it but to which they would
have to give grudging respect.
She said she could now see that his suicides were to kill the humiliating body self
and emerge bodiless and heroic. Each episode was triggered by a humiliation that
he would have been spared, he felt, were his body intact. Thus began the painful
exploration of his self-esteem and the shame that triggered such a rage directed
against himself.
A long period of working through ensued before the angry mourning of his dam-
aged body and unrealistic ego ideal could be reconciled. She pointed out that he
modeled himself after his oppressors with their sadistic bullying which he despised
and from which he himself had suffered. Were their values his, then or now? If not,
why does he treat his body now the way they did then? If he could go back and
direct the rage toward them at age 10, perhaps it would be a satisfaction, but now the
revenge must be in allowing himself a full life and living well and a different atti-
tude to his body.
He could not imagine a physically normal woman ever being attracted to him.
When he stopped pushing them away, he found one, or perhaps more accurately, she
found him.
A new ego ideal slowly emerged, first indirectly through his therapist and then
more importantly through his new woman friend. In his feelings about them both,
he found forgiveness, fortitude, determination, and perseverance to his goals, not

others’ goals, guided by his values, not others’ values. This involved recognition of
his hatred as only secondarily of himself, now understood to be originally then and
even now primarily directed against them. It was his feeling of futility at ever ade-
quately expressing it to them that turned it upon himself as a way of expressing it to
them. Only then could hope appear in him for a good life anyway. This involved
new career and interpersonal goals that would satisfy, and he began to work toward
them. There were no further suicide attempts.
Transference
Such patients often start treatment with a negative transference of contempt and
hate to the treatment and at the therapist. This is an enactment of their ego ideal as
sadistic tormentor. It represents a defense against their own damaged self-esteem
and fear of shame due to the anticipated contempt of themselves by the helper. This
is the projection of their own sadistic judgmental tormenting of themselves. To need
such help is to mark one as shamefully deficient and inferior. This early transference
must be understood as part of the story and can be added to it by describing the
attitude which the patient brings to the treatment and to his interaction with the
therapist.
It is crucial to realize that the experience of self-hatred is the experience of the
real self and the fear of the therapist’s contempt is a fear of their experience of the
real object. This adds reality, validity, and veracity qualities to the experience of
their feelings and makes them compelling.
A slightly later transference is to the treatment itself. Treatment-nonadherent
patients in general, and the determinedly suicidal patients in particular, imply in
their aloofness and contempt, if not directly in the manifest content of the story, that
there ought to be no hope. Hope is a fool’s errand and only for the weak. The treat-
ment will be merely a staging area for further failure or a renewed attempt at ending
it all.
Later yet, perhaps, appears a kind of idealizing transference to the therapist as a
long-suffering witness to the failure or death of the patient. Now the therapist is seen
as kind and good but innocent and naïve, a Greek chorus in mourning which accom-
panies the patient through the repeated chapters of failure or the dénouement of the
suicide death.
If these transferences can be experienced and described by the therapist, it may
free the treatment to proceed. But it must be done from an attitude in the therapist
of empathic neutrality. To take on responsibility for saving their life, or of lighting
the hope candle in them, of optimism and encouragement as a cheerleader, is only
to allow them to see the therapist as weak and foolish.
A true therapeutic alliance, with the patient and therapist united in a goal of
health, awaits working through of these transference issues.
Countertransference
The main countertransference dangers are from the reaction to the negative transfer-
ence. For patients who have had multiple failures in treatment, especially those who
consciously nonadhere to the treatment, a common countertransference is either
grandiose hope and determination or despairing pessimism. Both extremes may be
induced by the patients themselves and their attitude to help or by the mere fact of
the failures in their psychiatric history.
The grandiose helper believes that he or she is the only one who can rescue this
patient from the jaws of defeat and death. Through superior knowledge and caring,
the impossible will be made possible, the patient will be cured, and patient and
therapist can unite together in love and gratitude. The problem with this counter-
transference attitude is not that it is unachievable but rather that it guarantees the
unachievable. This is because such patients, after first unconsciously encouraging
the grandiosity in the therapist, attack and undermine the treatment because of it.
The other temptation is the opposite. When the patient is actively working to
undermine treatment, as all types of nonadherents do, the other countertransference
feeling is to feel de-skilled, to feel one has nothing to offer, that one’s professional
skill is weak and inadequate, and to see the therapist themselves as a person who is
naïve and wasting time. That is when professional training must come to the rescue
and help the therapist see that they are there to do a job and that the job has its tech-
nical aspects based on knowledge, training, and experience. Their good feeling
about themselves as an effective therapist must arise there. Their goal is to try to do
it right, and then many times, a good outcome is achieved, but not always. Their
professional success or failure is judged by how well they accomplish the treatment
according to professional knowledge of technique and professionalism values, not
by outcome. Outcome is an extra. Cure is an epiphenomenon of medical care as
justice is an epiphenomenon of the law. This attitude needs not be uncaring or harsh
if it is accepted as a simple fact of life and nature. Then, unburdened by the feeling
of countertransference shame or guilt, they may be strong enough to stay the course
of caring and working.
These two countertransferences are the Scylla and Charybdis, either of which
will aid in the destruction of the treatment. Avoiding both is the major goal.
Narrative Medicine, Transference, and Countertransference
The psychoanalytic concept of transference and countertransference focuses on the

clinical moment in the experience of patient and therapist. Inherent is the latent
idea of development over time, but it is underemphasized, perhaps because it is
considered inherent. But in treatment-resistant patients, the transference and coun-
tertransference tend to become dead – locked and unchanging. Here, the narrative
medicine concept of story can be particularly helpful. The story concept reminds
us to focus not only on the instant affect and affect concept experience but also on
the narrative context. The idea of story is a broader concept because it is synthe-
sized both synchronically and diachronically. Story has the capacity to synthesize
past, present, and future. Story also has the capacity to be developmental, that is to
say, not just sequential but progressively changing. Because affect contents gain
power when they are contextualized, the story concept takes the affect content
units and allows them more complete opening up into a broader and deeper affect
meaning. This has particular relevance with very ill patients whose symbolic rep-
resentations tend to be rigidly fixed and their stories stereotyped and nondevelop-
mental. The story concept alerts the therapist to the plasticity capacity of their own
therapeutic experience. The therapist may feel the more complex affect and the
next step in the developmental story before the patient. This is a common phenom-
enon in working with very ill psychiatric patients. We might call the transference
“the patient’s story of their experience of treatment and of the therapist.” We might
call the countertransference “the therapist’s story of their response to the patient’s
treatment experience.”
Care must be taken because the danger is the potential to confuse the therapist’s
personal story with the patient’s. The therapist must concentrate on the patient’s
story as causal and the therapist’s reaction as resultant. The therapist tries to feel
what the patient is feeling or almost feeling. That is the story. The therapist must
validate any intervention from the patient’s material as it emerges. Any intervention
by the therapist must be considered a descriptive hypothesis, as in, “now I wonder
if perhaps you feel...”
Conclusion
This chapter is meant to illustrate the use of narrative medicine as a psychodynamic

psychotherapy technique for use with seriously ill psychiatric patients who are
treatment resistant. In turning history into story, in gathering together the conscious
and manifest but dissociated elements, in sequencing a narrative, synthesizing dis-
sociations, stimulating the partly conscious and unconscious material to become
conscious, then can a patient come to understand their treatment resistance as an
integral part of their core personality and life story. Only then may they cooperate
in the effort to free themselves.
The contribution of this chapter is to describe the utility of narrative medicine in
dynamic psychotherapy. The psychoanalytic idea about fantasy and core personality
fantasy is helpful in elucidating the idea of a static, enduring, and determinant struc-
ture. The narrative medicine idea is an ongoing process idea of a developmental
story integrated both backward and forward into the adaptational arc of a life.
This idea became inherent in the application of psychoanalytic ideas about fan-
tasy expressed in the technical concept of working through. But in narrative medi-
cine, this idea is central.
References
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Challenges. Washington, DC: APA Press; 2005.
3. Marcus ER. Psychosis and Near Psychosis: Ego Function, Symbol Structure, Treatment.
Revised. 3rd ed. New York: Routledge; 2017.
4. Charon R. Close Reading: The Signature method of narrative medicine. In: Narrative Medicine-
Honoring the Stories. New York: Oxford University Press, USA; 2006.
5. Schafer R. Narrating, attending, and empathizing. Lit Med. 2004;23(2):241–51.
6. Genette G. Narrative Discourse: An Essay on Method. Ithaca: Cornell University Press; 1980.
7. Berthof A. Learning the uses of chaos. ERIC # ED 176319; ED.GOV.ies. 1979.
8. Charon R, Marcus ER. A narrative transformation of health and healthcare. In: Charon R,
et al., editors. The principles and practice of narrative medicine. New York: Oxford University
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9. Lewis B. Narrative Psychiatry: How Stories Can Shape Clinical Practice. Baltimore: Johns
Hopkins University Press; 2011.
10. Easton D, White D. Narrative Therapy: Narrative Means to Therapeutic Ends. New York: WW
Norton; 1990.
11. Plakun EM. Treatment Resistance and Patient Authority. New York: WW Norton & Co.; 2011.
Part III
Solving the Dilemma
Treatment Adherence
from the Perspective of Dialectical 10
Behavior Therapy: Sitting in the Boat
and Staying the Course
Jennifer H. Byrnes and Adam C. Payne
Introduction
Dialectical behavior therapy (DBT) is an empirically driven and validated t reatment.

Dialectical behavior therapy is traditionally known for its adeptness at keeping
clients in therapy. These clients are often individuals for whom other therapies have
not succeeded. DBT’s treatment [1] outlines strategies in terms of how to keep cli-
ents in treatment, what to do to keep clients in treatment, and how to keep treatment
moving forward. These strategies are known as commitment strategies. We will
review these strategies with an emphasis on maintaining client’s treatment
adherence.
In widening our scope, our intended additional contribution is to focus on a dif-
ferent part of the process that might be useful to clinicians in practice, but not talked
about as frequently or as deeply in standard or typical DBT trainings. This focus
goes beyond what to do in the treatment and how to do the treatment; it is how to
“be” in the treatment. We will address specific dialectical stances which a therapist
can take in order to move the therapy along, while honoring that the therapy is work
in which a client’s commitment and energy will naturally wax and wane.
In order to address how to keep a client “in the room” and how to use the client’s
commitment in the treatment, we look toward the dialectical approaches of how a
therapist needs to approach a client within a DBT framework. Linehan outlines
three different dialectically balanced perspectives for a therapist to consider in terms
of their own approach as a clinician with clients. The strategies are (1) Orientation
to Acceptance versus Orientation to Change, (2) Unwavering Centeredness versus
Compassionate Flexibility, and (3) Nurturing versus Benevolent Demanding.
Through case presentations, we will describe and provide examples of each of these
particular dialectical perspectives, we will show how they intersect, and we will
J. H. Byrnes (*) · A. C. Payne

Center for Cognitive and Dialectical Behavior Therapy, Lake Success, NY, USA
e-mail: jbyrnes@ccdbt.com; apayne@ccdbt.com

https://doi.org/10.1007/978-3-030-12665-0_10
146 J. H. Byrnes and A. C. Payne
discuss how they can be used to help a therapist to help their client accomplish the
client’s goals and to stay committed to the treatment. It is worth noting that the
strategies could likely be applied to almost any treatment, but here we will speak
specifically of their use in DBT.
What to Do in DBT to Increase Treatment Adherence
Conceptualizing Treatment in Stages
One way in which DBT helps to facilitate movement in the therapy is that DBT
conceptualizes a stage of treatment that aims specifically to attain clear and spe-
cific agreements with the client before (or at least concurrently) with the treatment
moving forward. This Pretreatment Stage helps the clinician to identify targets for
the therapy collaboratively with the client. At the same time, Pretreatment can
also work to manage the therapist’s emotions by acknowledging openly that both
the client and the therapist need to “get on the train” before the therapy can “leave
the station.”
For example, a therapist’s anxiety about a client’s high-risk behavior (i.e., risky
sexual behavior) can be reduced by engaging the client in defining his or her goals
for their own therapy (i.e., “I want to stop sleeping around because I always feel
worse afterward”). Clients’ desire for change is often at odds with how difficult
change appears to be to achieve (i.e., “While I want to stop having sex with strang-
ers, I do not want to feel lonely”). A client’s willingness to decrease high-risk
behavior is often the first step toward making the change. A therapist can emphasize
that, while Rome was not built in a day, the stone carvers and the masons had to start
somewhere (i.e., “Can you stay home and watch your favorite movie on one
Saturday night and order in your favorite food, rather than go to the local bar where
you usually meet men?”).
Pretreatment precedes Stage 1 DBT, and one focus of Pretreatment is to gain
agreement that client and therapist have mutual goals. In Stage 1 DBT, the treatment
goals focus on moving from behavioral dyscontrol to behavioral control. In other
words, Stage 1 DBT focuses on decreasing behaviors such as non-suicidal self-
injurious behaviors, decreasing suicide attempts, decreasing excessive substance
use, decreasing emotional outbursts or fighting with friends and family, decreasing
dangerous sexual behaviors, and decreasing overall dangerous behaviors. One focus
of Pretreatment is to identify the targets that are then addressed in Stage 1 DBT. The
primary targets of Stage 1 are to decrease (1) life-threatening behaviors, (2) therapy-
interfering behaviors, and (3) quality-of-life-interfering behaviors. Additionally, a
fourth target is to increase the client’s use of skills. Moving from Pretreatment to
Stage 1 DBT and then through Stage 1 increases client safety and decreases thera-
pist anxiety. This process allows for the establishment of a truly collaborative rela-
tionship in which the client learns to trust the therapist and to trust herself. These
behaviors are addressed by using such DBT techniques as active treatment target-
ing, behavior chain analysis, and behavioral solution analysis.
10 Treatment Adherence from the Perspective of Dialectical Behavior Therapy… 147
After assessing the maintaining factors for target behaviors (e.g., Does an adoles-
cent’s mother lie in bed with her and soothe her all night after the adolescent has cut
herself? Does the boyfriend promise not to break up with her? Can the adolescent
not yet tolerate feeling lonely?), standard behavioral interventions can be applied.
These interventions can include skills training (e.g., teaching the adolescent to com-
municate to her mother that she is having urges to self-injure before she self-injures),
cognitive modification (e.g., working on the thoughts that might precede self-injury
such as “I am a terrible person, I deserve to be in pain.”), exposure therapy (e.g.,
increasing the adolescent’s ability to “sit with” negative self-thoughts and the
accompanying emotions without acting on them), and contingency management
(e.g., teaching the mother to be less soothing and less emotionally available after
self-injury has occurred and to be more rewarding and present when the adolescent
communicates her urges to the mother before the self-injury).
Pretreatment also precedes Stage 2 DBT, which aims to help clients to move
from emotional avoidance (e.g., shame and/or trauma reactions) to emotional expe-
riencing. Once a client has demonstrated increased behavioral control and has
shown some ability to sustain that behavior control, it is often the case that those
clients still experience painful and distressing emotions. These clients may be able
to manage and control their behavior, but they have difficulty managing the inten-
sity and the pain of their emotions. For instance, Monica is a patient who would
have extreme shame reactions whenever she perceived someone else criticizing her.
For years, Monica would become overwhelmed with shame and would engage in
self-injury to help her re-regulate her emotions. After Stage 1 of DBT, Monica may
no longer cut herself when she feels criticized by others, but she is still rendered
fairly paralyzed by the shame connected to such criticism and may have difficulty
working effectively at her job or “letting go” of the shame after such a criticism. The
interventions we would use in Stage 2 DBT for Monica would be exposure-based
interventions or mindfulness-based interventions, both aimed to help Monica condi-
tion a new response to criticism.
Focus on Commitment
Although we seek to show how Pretreatment fits within a larger frame of treatment
in which several stages of treatment are conceptualized, the flow through all of these
stages of treatment starts with the Pretreatment phase and the commitment work that
is done within that Pretreatment phase. DBT aims to facilitate treatment adherence
through open discussion with the client about what the eagle’s eye view of the ther-
apy is for each stage. This eagle’s eye view prompts acknowledgment and discussion
of what metaphorical “highway” the treatment is on (i.e., commitment to treatment
or aiming behavioral control or aiming for emotional experiencing) in additional to
which “lane” of the highway the treatment is found on any given week. Pretreatment
as a concept also ensures that the client sees the steps forward that are designed in the
treatment, so the client can better collaborate with the clinician and be less likely to
unknowingly engage in behaviors that could be treatment nonadherent.
In the Pretreatment Stage, the client is asked for her goals, and the DBT therapist
weaves those goals to DBT targets. In the abstract, it is difficult for clients to agree
to work toward eliminating problem behaviors that have functioned well for them to
help them to regulate their emotions. It is difficult to ask a client, in a vacuum, to
stop engaging in self-harm by cutting behaviors. One memorable client made this
leap much more easily when the client and therapist together made the connection
that the client would have a much easier time getting on the school volleyball team
if she did not have to hide self-injury scars from the coach. This connection helps
the client to remember “why” it would benefit her to find alternatives to cutting
when she had urges to do so. Similarly, the DBT therapist rarely asks for the client
to “agree to treatment” or even “commit to staying safe,” as these commitments
would then be commitments to concepts, not behaviors. Rather, the DBT therapist
is more likely to make requests for the client to commit to engage in specific skillful
behaviors. The DBT therapist would ask the client to “agree to do three distress
tolerance skills” or to “use phone coaching prior to engaging in self-injury.” When
the requested behavior is clear and viewed as “doable,” it is much more likely that
the client will remain treatment adherent and will follow through on the request.
When specific aims or targets are identified in the Pretreatment Stage, DBT ther-
apists utilize commitment strategies to help attain and deepen commitment to
engaging in those specific behaviors. The strategy of pros and cons asks the client
to evaluate the pros of engaging in the new or requested behavior (e.g., attend DBT
skills group, complete a diary card, or use a specific skill rather than cut herself with
a razor blade) and also the cons of the new behavior. For example, the therapist
would openly and nonjudgmentally ask the client to discuss what benefits the client
gains from self-harm cutting with a razor blade (e.g., relief from emotional pain, the
effect of communicating to family or friends about their distress via their cuts or
scars, etc.). The therapist would then also ask the client to describe the detrimental
effects of the self-harm (e.g., reports of parents’ or partner’s anger, lost opportuni-
ties due to scars, acknowledgment of threats made by school or family to the client
about impending intensified level of care such as inpatient or residential treatment).
The therapist, noting that the client has not yet made a commitment to the treatment,
accepts all of these pros and cons equally “like leaves falling on a blanket” and then
asks the client to sort through the pros and cons to help the client to make a decision
about committing to fully engaging in DBT and specific skillful behaviors or not.
The strategy of foot in the door originated in social psychology and also from
sales tactics. Foot in the door suggests that a way to develop commitment to a new
behavior is for the therapist to request the smallest manifestation of the desired
behavior and, once agreement from the client has been achieved, to intensify the
request. For example, “We would like to invite you to join our DBT Skills Group for
six weeks, which is one module of DBT. Yes? Well, all the skills we teach actually
are taught in six months, one full cycle. If one module is okay, could we get an
agreement to the whole six-month cycle?” One of our clients, Jane, was taught
about mindfulness in DBT. Mindfulness in DBT is the set of skills and strategies,
born from Zen Buddhism, that have been brought into psychotherapy. Jane came to
learn that mindfulness in DBT is a way that she could learn to focus her mind on her
goals and as the way that she could reduce her self-harm urges and impulsive reac-
tivity to her emotions. At the same time, mindfulness is a skill, like shooting free
throws in basketball or playing a new musical score in the piano. Like these skills,
mindfulness skills require practice. Jane understood the need to practice and was
initially asked to practice 5 minutes of mindfulness in session with the therapist.
After accepting that request, foot in the door as a strategy led the therapist to say to
Jane, “If you may benefit from five minutes of mindfulness practice with me in ses-
sion once per week, imagine how much faster and deeper your gains may be, if you
practiced five minutes of mindfulness every day!”
In contrast, the strategy of door in the face asks the client for the full and com-
plete requested behavior, and if and when the client declines to commit to the full
request, the therapist slowly decreases the intensity of the request until the client
agrees. Susan came to DBT straight from an inpatient unit after a fairly lethal sui-
cide attempt. She was not particularly interested in treatment and was somewhat
disappointed that her attempt was not successful. She absolutely refused to commit
to “taking suicide off the table” for the 6 months that it would take to complete the
first cycle of DBT skills. She even expressed ambivalence about committing for the
6 weeks that it would take for her to complete her first module. She was able to com-
mit to staying alive for the next session, in 1 week. Weekly, she renewed her week-
long commitment, until she no longer needed to do so, and she moved into Stage 1
DBT treatment.
The commitment strategy of devil’s advocate is used to strengthen a verbalized
commitment, especially but not exclusively, when the therapist believes that the
commitment already attained may have been gained too quickly and too easily.
Devil’s advocate is a useful strategy when the therapist worries that the client will
lose that shallow commitment as soon as the client has to face a substantial real-life
test or an intense surge of urges or emotions. For example, “I am glad you have
readily agreed to join the DBT Program, but I do want you to know that there will
be homework each and every week.” Barbara was an adolescent who was very eager
to begin DBT after she had discovered the treatment on the Internet, and she prod-
ded her parents to set up an intake. While she was excited to start, Barbara underes-
timated the work that would be necessary to do in order to learn and engage in new
behaviors that were not self-destructive. In order to prevent this young woman from
becoming disenchanted with the treatment, Barbara’s commitment was garnered
with the following paradoxical suggestion: “I know you want to be here and learn
how to sit through painful emotions and this work is very difficult. Are you sure you
wouldn’t rather maintain the coping mechanisms that you have been using, such as
cutting and exploding at your parents? Why not?”
Freedom to choose and absence of alternatives is a strategy best used when the
client has not willingly requested therapy, perhaps because they have been court
mandated or simply because a parent has brought a teenage client to treatment
against their will. Rather than argue in favor of the therapy, this commitment strat-
egy suggests that the therapist remain neutral. In doing so, the therapist walks with
equanimity toward the different possible outcomes of the choices that are available,
even if the alternatives are not equal in the successful potential of the outcomes.
Katie was a very bright, older adolescent who came to our outpatient program after
spending several months in a private residential treatment facility. Katie was
unhappy about leaving the facility where she felt supported and cared for, yet her
family could no longer afford to keep her there. She was ambivalent about commit-
ting to outpatient therapy, yet Katie knew that if she were not able to be maintained
in outpatient DBT, she would have to go to a state hospital, perhaps indefinitely.
During Pretreatment, Katie was reminded by her therapist that she did not have to
engage in DBT (i.e., she did not have to fill out a diary card or engage in behavior
chain analyses, etc.) as Katie could absolutely choose to go to a state psychiatric
facility. These comments were made with full awareness that Katie’s choice would
impact her ability to attend college the following semester.
Commitment: Beyond the Strategies
The concreteness of these commitment strategies does lead to an emphasis in

teaching those specific strategies to clinicians who are new to DBT, when they are
first learning DBT in workshops, trainings, or in graduate school programs. While
these commitment strategies are certainly a relevant part of the treatment process,
we believe that the process of obtaining commitment to new behaviors goes well
beyond discrete and momentary interventions such as the commitment strategies
defined above. We believe that more substantive commitment is primarily an exer-
cise in resolving dialectical tensions. Falling into extremes of change-focus or
falling into extremes of acceptance-focus can both lead to a therapist and a ther-
apy becoming “stuck.” We will provide evidence to support our opinion and per-
spective that dialectical assessment, dialectical framing, and dialectical
problem-solving are the mechanisms by which clients are actively engaged in the
treatment and how client moments of “stuckness” are resolved actively in the
treatment.
The following example explains a dialectical process. This example aims to help
clinicians identify how they could utilize dialectics to keep a therapy moving for-
ward. If we imagine a teenager and her parent looking to address the issue of a late-
night curfew debate that exists between them, we can show this dialectical
problem-solving process. We first look at the two non-dialectical, extreme poles of
the alternate sides of the argument (thesis and antithesis), and then we search for a
more dialectical “synthesis.” In this curfew example, the teenager wants to come
home from an evening party at 1 AM. The mother wants the teenager to come home
at 10 PM. Two such different poles could lead to a tug-of-war between the teenager
and the mother.
• THESIS: In our case, the essence of the teenager’s side is that having to be home
early from the party will result in “fear of missing out” on the part of the teen-
ager. The essence of the teenager’s concern is that she wants to be able to spend
time with her friends and that she does not want to miss out on exciting
opportunities.
• ANTITHESIS: In our example, the essence of the mother’s side is “safety.” The
mother here is concerned that “nothing good happens after 11 PM” and is con-
cerned about the teenager’s well-being.
• COMPROMISE: We note that neither mother nor teenager will likely be satisfied
with the “compromise” position of 11:30 PM. Compromise is not satisfactory for
either mother or teenager because the “compromise” does not actually address
the “essence” of either person’s side. The “compromise” position, requesting
that the teen be home at 11:30 PM, does not address “fear of missing out,” and it
does not address “safety.” Compromise is often NOT dialectical.
• DIALECTICS: Instead, a dialectical process acknowledges the truth (or essence)
in both of the teenager’s position and the mother’s position. Being dialectical
encourages each seemingly opposing side to find the truth in, and to validate, the
other person’s position.
What solution can we find where the teen does not have to miss out and the par-
ent can feel that the teen is safe? When we ask this question in our DBT trainings
and in our DBT skills groups, we often hear the following possible dialectical
solutions:
1. “The teen can stay out till 1AM (addresses fear of missing out) and will check in
by video call with the mother every hour (addresses safety).”
2. “The teen can stay out till 1AM (addresses fear of missing out) and will get
picked up by the mother at 1AM (addresses safety).”
3. “The teen can stay out till 1AM (addresses fear of missing out) and will take a
taxi home when she leaves (addresses safety).”
4. “The teen will go to the party (addresses fear of missing out) and will stay over-
night at that friend’s house (addresses safety, if late night driving is a concern).”
5. “The teen will not be allowed to go to a sketchy party (addresses safety) and yet
the teen will be allowed to invite responsible party people to her home (addresses
fear of missing out).”
6. “The teen will not be allowed to go to a sketchy party (addresses safety), and yet
the mother makes an effort to find a way to get the teen to another, less sketchy,
social event on another day (addresses fear of missing out).”
As we see in the examples that have been suggested to us, which may or may not
actually be effective for this family, multiple examples can honor both the teen’s
side and also the parent’s side. One notable notion in dialectics is that there is never
only one solution. Multiple possibilities can all be dialectical if they “honor” the
truth in the two sides. This idea is quite relevant to therapy in that a dialectical
worldview assumes that there inherently will always be multiple ways for a client
and a therapist to connect, and therefore there will always be multiple possibilities
for getting a therapy “unstuck.”
If dialectical synthesis is the process by which two apparently opposing, polar-
ized sides can be joined, dialectical synthesis is then the process by which a tug-of-
war can be turned into collaboration in therapy as well. The most fundamental
dialectics in DBT is that of acceptance and change. Linehan states, “Acceptance of

both the client and the therapist, of both the therapeutic relationship and the thera-
peutic process, exactly as all of these are in the moment. This is not acceptance in
order to bring about change, otherwise, it would be a change strategy. Rather, it is
the therapist’s willingness to find the inherent wisdom and ‘goodness’ of the current
moment and the participants in it, and to enter fully into the experience without
judgement, blame, or manipulation” ([1], p.109).
A dialectical commitment process requires that therapist collaborates with the
client regarding the road map of the therapy rather than laying out that road map
unilaterally for the client. The DBT therapist uses dialectical strategies to help the
client to feel like their needs are being heard, even as the DBT therapist starts to
move the treatment forward toward treatment targets. As an example, Amanda, a
high school student, came to an assessment session at our center presenting with
depressive symptoms, suicidal thoughts, and intense headaches. Amanda came
from a family where high achievement was prized and that drive for achievement
had been internalized. It was critically important to her developing sense of iden-
tity that she succeed and excel academically. Amanda’s frustration and anxiety
were heightened by failure to achieve academically and to achieve socially, in ways
that she felt were expected of her. Prior treatment providers, her parents, and her
teachers all saw that this teen was experiencing stress. Many believed, with good
evidence, that her headaches were somatic manifestations of that anxiety. The
adults in her life recommended that she decrease the amount of pressure that she
had taken on by reducing her academic course load and by resting more. This sug-
gestion created a tug-of-war between these adults and Amanda, and Amanda fought
against these ideas by fighting against DBT therapy. Her fight with the adults was
born from the fact that the adults’ treatment suggestions were non-dialectical. The
recommendation to lighten her load was only one side of the dialectic, and it cre-
ated polarity exactly because it did not take into account the other side, specifically,
Amanda’s drive to succeed. When instead it was presented that treatment would
aim to help her to sustain her need to achieve (keep the bar high) even as it sought
to help her to manage the anxiety that the current course load prompted, Amanda
dropped the tug-of-war rope and signed up for DBT. The dialectical commitment
requested was asking her to work to accept the high pressure and find ways for her
to relax her grip.
This dialectical process is not a “one moment in therapy” intervention. The
above example actually took several sessions to work through and to deepen to
the point that treatment could commence. Whereas DBT commitment strategies
may be important moments in the therapy, taking the therapy to a next step, the
dialectical process of joining the client’s worldview (thesis) and the therapy’s
worldview (antithesis) both take longer and also form a deeper understanding
(synthesis) that may help to facilitate treatment progress though “stuck” moments
and may help to avoid treatment nonadherence on the part of both the client and
the therapist.
Anticipating Nonlinear Progress
As may be evident, a focus on the therapist’s awareness of both their own role in the
therapy and also awareness that the therapy will unfold in stages are ways that DBT
helps its therapists to stay engaged in the treatment even during difficult moments
(or weeks) of therapy. Sometimes, it is unclear whether the client may “get off the
[psychotherapy] train” or whether the train itself has run out of fuel. DBT antici-
pates that commitments to increasing effective behaviors are not linear and are not
permanent. DBT does not expect complete and continuous adherence from the cli-
ent and does not automatically pathologize the client when therapy-interfering
behaviors occur. (The therapist believes in the client). Commitment exists as a con-
tinuum and both the DBT therapist and the client remain alert to the notion that
there will inevitably be times when the client is more committed than others.
Accordingly, DBT anticipates therapy-interfering behaviors and targets them
openly, clearly, and collaboratively. These therapy-interfering behaviors are often
conceptualized in three categories: (1) behaviors of nonattendance including being
late to session, missing sessions, and falling asleep in sessions; (2) behaviors of
non-collaborativeness including arguing with the therapist or disputing therapy ben-
efits; and (3) behaviors of non-compliance including the client not completing their
DBT diary card or not completing their DBT homework either for DBT skills group
or for DBT individual sessions. DBT treats these therapy-interfering behaviors as if
they were any other type of behaviors. These behaviors can be assessed for the func-
tion and also for relevant antecedents and consequences using the same treatment
strategies as could be used to assess suicidal behaviors, substance use behaviors,
eating disorder behaviors, or any other treatment-relevant behaviors. The DBT ther-
apist is asked to target these behaviors and talk about them directly. If talking about
the behavior directly is not sufficient to change the behavior, the client and therapist
are asked to conduct behavior chain analyses on these therapy-interfering behav-
iors. DBT requests that DBT therapists are mindful of the degree that they personal-
ize the client’s therapy-interfering behaviors. For example, when a therapist learns
that his client, Joanie, was lying about her stockpiling medications to keep suicide a
viable option for her, the therapist asked for help from the DBT team to ensure that
he did not let his personal judgments about honesty, his anger about being lied to,
and his fear that he could not trust Joanie’s word, overly color, or inform his need to
discuss this therapy-interfering and potentially life-threatening behavior.
In this vein, it is important to note that the work inherent in successful, adherent
DBT is quite difficult and demanding on a client. Clients are asked to sit with and
tolerate painful emotions – emotions that they may have been working very hard to
avoid (exposure to emotions). Clients are asked to let go of suicide and self-injury
as a problem-solving option or as an escape fantasy/plan (increase effective problem-
solving). Clients may be asked to reconsider relationships that cause them pain and
don’t honor their drive for greater emotional health and well-being (increase inter-
personal effectiveness and self-respect).
Getting Unstuck DBT is dialectical in the Pretreatment Stage and throughout the
entirety of the treatment. Once again, DBT anticipates that there will be times in the
therapy when treatment is not linear or when treatment progress becomes stalled
altogether. This assumption stems from the emotion-focused nature of the etiology
of the problems that lead a client to seek and start DBT. DBT asks therapists to
maintain awareness of times when the treatment may fall out of balance and may
need to be rebalanced so that the treatment moves forward (balancing acceptance
and change). Within a session, to rebalance a treatment that has gotten stuck and to
facilitate movement forward, DBT therapists are asked to utilize dialectical com-
munication strategies, and stylistic strategies help to get a treatment “unstuck.”
Communication strategies balance the two poles of reciprocal communication

and irreverent communication. Reciprocal communication is the acceptance side of
the dialectic, wherein a therapist’s warmth, personal connection, and validation are
key elements. The reciprocal therapist may have a heart to heart with the client
when the therapy becomes stuck. The therapist may utilize self-involving self-
disclosure in DBT (“When you say the skills are stupid, it pushes me away and
makes it harder for me to stay engaged in the therapy.”).
At the same time, a dialectical therapist needs to be able to shift and move to the
change side of the dialectic, which often leads to irreverent communication. An
example of irreverent communication is extending, where a therapist seeks to help
a client and a therapy that is “stuck” by taking the client’s statements to the fullness
of their expression. Fran is a patient who feels hopeless about her ability to mend
her relationships with her adult children. She frequently comes into session telling
her therapist that she “gives up” and no longer wants to even try to be the mother her
adult daughter wants her to be. The therapist’s efforts to dissuade Fran from this
position only serve to dig her feet in further. Extending allows the therapist to sug-
gest that the client is indeed correct and should radically accept that her daughters
will never have a relationship with her. When the therapist joins Fran in her hopeless
statement, Fran recoils and begins to argue for the need to work on their relationship
and even suggests a family session.
How to “Be” in DBT to Increase Treatment Adherence
In a wider view of the treatment, DBT therapists utilize an entire mode of DBT
treatment, that is, DBT consultation team, to help address times in DBT when a cli-
ent’s therapy has become “stuck.” DBT consultation team is a mode of the therapy
wherein DBT therapists can monitor, assess, and solve issues that arise in the ther-
apy with regard to (1) client’s lack of progress, (2) client’s therapy-interfering
behaviors, (3) therapist’s therapy-interfering behaviors, and (4) therapist emotions
about the client’s lack of progress or the therapy-interfering behaviors.
More broadly, DBT as a “therapy for the therapist” and DBT consultation team
as a mode of DBT help a therapist to move beyond what the therapist needs to “do”
in DBT and help the therapist move toward how to “be” in DBT.
Oriented to Change vs. Oriented to Acceptance
DBT asks therapists to be aware of the degree to which their Orientation to Change
and their Orientation to Acceptance may be more or less balanced in any given cli-
ent’s therapy or within a therapist’s overall tendencies in their provision of therapy.
We believe that there may not be a more important single focus, when looking to
keep a client’s therapy moving forward instead of feeling stuck and unmoving.
Jackie is a 20-year-old morbidly obese client who first presented as a suicidal,
self-injuring adolescent who maintained a minimal interest in DBT. She trudged
through two cycles of adolescent and family DBT yet remained uncommitted and
disinterested. Interestingly, she reapplied for treatment as an 18-year-old with a
desire to increase her ability to regulate her emotions and feel less volatile and out
of control. While Jackie was interested in increasing her emotion regulation skills,
she refused to address her lack of self-care and her body image issues. The therapy
work had to balance the need to accept where she was and therefore not directly
target her obesity AND simultaneously increase her ability to tolerate distress and
dysregulation, with the ultimate end goal of Jackie tolerating discussions about her
weight and her eating habits. The goal of weight loss is one which is infused with
ambivalence for Jackie. Hence, the dialectical strategy is one of touching on it,
acknowledging that it is a future target, and then mutually and collaboratively agree-
ing to gently place it on the therapeutic “back burner” is one which requires both
patience and mindfulness of the Oriented to Change vs. Oriented to Acceptance
Dialectic.
Unwavering Centeredness vs. Compassionate Flexibility
DBT describes a dialectical stance of Unwavering Centeredness versus

Compassionate Flexibility. The therapist needs to hold both an Unwavering
Centeredness by firmly sustaining the overarching goals of the therapy (building a
life worth living), and yet the DBT therapist also has to display Compassionate
Flexibility as to how to make the journey. Andrew was a young man in his 20s who
was hesitant and questioning about whether he wanted to attend DBT skills group
as part of his DBT treatment. He liked the therapist and wanted to continue sessions
with him but did not connect well with the concepts of mindfulness and was uncon-
vinced that many of the skills would be useful to him. The therapist felt that the
comprehensiveness of DBT, with both individual and skills group DBT was a neces-
sary part of the treatment plan. Both the Andrew’s symptom severity and the com-
plex nature of his relationship and identity issues made it more complicated than
any “individual only” therapy could manage.
The therapist felt that he needed to provide an Unwavering Centeredness to the
position that full and comprehensive DBT was needed. Even though Andrew’s
strong and persuasive personality argued back strongly and loudly against such a
decision, the therapist stayed consistent in the message that, in order to continue
seeing the individual therapist, Andrew would need to stay in DBT skills group and
adhere to the group attendance policies. At the same time, both individual therapist
and skills group leader could see Andrew’s struggle with applying mindfulness to
his life. With intention, the stance of Unwavering Centeredness was balanced by a
stance of Compassionate Flexibility in both individual and skills group modes of
DBT therapy. The skills group leader focused on Andrew’s participation in group in
the areas of DBT to which he could most easily connect. While Andrew was required
to be present during mindfulness exercises and discussions, and was required to
learn all the DBT skills, the skills group leader was more flexible in allowing less
participation at those times when mindfulness or more “hippy” skills were being
presented. The skills group leader “took what she could get” and no more. Similarly,
the individual therapist did not emphasize mindfulness with this particular client in
the early stages of the therapy. And later, when the client did start to demonstrate an
ability to pause before reacting as quickly, and an ability to react less intensely, the
individual therapist was gentle in reinforcing Andrew’s mindfulness without “throw-
ing it in his face” that Andrew was indeed using skills that he had rebuked earlier in
the treatment.
Benevolent Demanding vs. Nurturing
In a similar fashion, DBT therapists need to find a dialectical synthesis in both nur-
turing and demanding. Nurturance in DBT includes “teaching, coaching, assisting,
strengthening, and aiding the client, all from a stance of cherishing the client’s abili-
ties to learn and to change.” Carly is a client in her mid-20s who was referred by a
local hospital for repeated suicide attempts, intense and painful reactions to her
trauma memories, interpersonal conflicts, and identity issues. The client reported
multiple personas, which were color-coded. These personas reflected the kind of
emotion Carly was experiencing in the moment and how in-control she felt regard-
ing that emotion. Carly had not been employed in any formal capacity since she had
graduated an art college several years before depression and anxiety increased. If
asked about activities Carly would consider that would be productive, Carly offered
to write music or make her own clothes, which stood in contrast with the therapist’s
initial hopes that she stick to her initial stated goal to “get a job, earn some money,
and move out of my mother’s home.”
As Carly had been referred to DBT after repeated self-harm and suicidal behav-
iors had prompted repeat hospitalization, the therapist immediately focused on
decreasing behaviors that would continue the cycle of hospitalization and that could
result in Carly’s suicide. Carly did not show a natural tendency to be structured and
organized, and yet the therapist believed that adhering to the diary card part of DBT
(i.e., collecting a weekly record of ratings of emotions, ratings of urges to engage in
problem behaviors, report of the absence or presence of target behaviors that week,
and report of skill use that week) would be essential to catching risk factors and to
reducing suicide risk. The therapist benevolently demanded this diary card each and
every week, even though many early weeks of diary cards were missed until adher-
ent habits were eventually formed. At the same time, the therapist cultivated Carly’s
creative side by encouraging her to make her own clothes and writing and recording
her own music.
Prior to this treatment, Carly notably was more likely to punch herself or hit her
head on the ground out of self-invalidation and self-hatred. Eventually, self-
validation, as tracked on the diary card, increased in frequency as the treatment
progressed, perhaps in part because Carly’s creativity was nurtured, and sufficient
time was spent to highlight and find creative opportunities for her to pursue. The
therapist was able to also sustain a focus on financial stability (benevolent demand-
ing) in part because Carly appeared to feel like the therapist “got” her and valued the
attributes that Carly actually valued about herself.
Case Examples
Case Example #1
Our first clinical example is that of a 28-year-old woman, Gail. The client presented
with chronic major depression and all nine criteria for the DSM IV diagnosis of bor-
derline personality disorder. She had a history of psychiatric hospitalizations, failed
romantic relationships, and tenuous relationships with her parents, with whom she
still lived. She was addicted to cannabis and spent her days “working” in a large,
impersonal company, mostly passed out in her corporate cubicle – a side effect from
the excessive cocktail of psychotropic medications that she had been prescribed.
Gail presented as angry, as if life had consistently handed her the short end of
every metaphorical stick. She alternated between being aggressively hostile and
helplessly hopeless. In one moment, she would aggressively challenge any and all
of the “DBT bullshit” (as it is often affectionately called by many a new client) and
in the next moment would break down in sobs about the hopelessness and meaning-
less of her life. Gail had no friends and no love interest. She was paralyzed by social
anxiety, and she had a “meaningless” job where she embarrassed herself daily
because she could not function as expected. Gail’s only goal for therapy was to “feel
better,” though she believed this was impossible and she had no vision for the future.
She very much wished that she were dead.
Gail’s pain and her anger at having so much pain were difficult for the therapist
to “sit with.” The waves of hopelessness rolled off her and filled the therapy room.
Commitment, in the beginning of the therapy, meant sticking to the most basic DBT
behaviors, i.e., staying alive from one session to the next and filling out her diary
card to track her moods, urges, and behaviors over the course of the week. In this
beginning stage, her therapist served as a receptacle for her rage. The therapist and
the therapy contained the emotions, allowing her to “have” the emotions in the
therapy room while continuously assessing her risk for suicide. The therapist
refused to engage in the “give-me-a-reason-to-live” dialog while maintaining a
steady stance that Gail could build a life worth living; she could dig out from her
sadness if she were willing to exert the effort (Unwavering Centeredness and
Compassionate Flexibility).
Gail cried throughout most of the 90 minutes in skills group. The skills group
leader felt that it was likely Gail was not learning the skills that were being taught.
Interestingly, and not unusually, Gail came to DBT skills group and DBT individual
sessions every week. She filled out her diary card, and she did call the individual
therapist for DBT skills coaching. Most importantly, she told the DBT individual
therapist when she was planning to kill herself. These behaviors were viewed as
important collaboration. We take it where we can get it!
(Use of Consultation Team) The DBT consultation team spent a disproportionate
amount of time discussing Gail, as her therapist truly feared that Gail would kill
herself. The team helped the therapist deal with her fear around Gail dying.
Thankfully, the team never seemed to tire of hearing about the therapist’s anxiety
and her worry, frustration, and resentment toward Gail for draining the therapist’s
emotional resources. Consultation team is often termed “therapy for the therapist.”
This nomenclature is a bit misleading, as it implies that any one of the members of
the team may be sitting in the team meeting, “baring their soul” and “displaying
their innermost personal emotional damage” to their colleagues. Rather, in the treat-
ment process for Gail, the team truly provided the supportive structure to help the
therapist maintain the behaviors and perspective that she needed in order to stay in
the treatment and not give up on the client. Additionally, the team served as a sound-
ing board to consider hospitalization and other treatment options.
Indeed, the treatment providers hospitalized Gail twice in 6 weeks. After the
second hospitalization Gail returned to treatment, still depressed, hopeless, and now
inflamed with shame, the individual therapist realized that she had to “let go of the
rope.” The individual therapist could not care about Gail’s life more than Gail did.
In the end, for the most part, while they could continue sessions, the individual
therapist was actually powerless to keep Gail from killing herself (Balancing Being
Oriented to Change and Oriented to Acceptance).
Quite interestingly, as soon as the therapist realized this perspective, a seismic
shift occurred in the therapy. As soon as the therapist stopped pushing for change
and instead engaged in radical acceptance (which can be considered a change of
mindset), Gail began to take responsibility for keeping herself alive. Once the thera-
pist stopped doing the behaviors for Gail, Gail began to do the more skillful behav-
iors for herself. Gail began to initiate behaviors that would eventually be the
foundation of a life worth living (Unwavering Centeredness and Compassionate
Flexibility).
Gail and the therapist started with the most basic behaviors, procuring food and
figuring out what Gail liked to eat. If one is to live, one must eat, and one of the
greatest, simplest pleasures lies in enjoying what one eats. The individual therapist
coached Gail gently, but with her feet firmly on the ground. These steps were what
she needed to do; these steps were going to be how Gail started life over. Gail had
to figure out who she was. If Gail was not going to be dead, she had to learn how to
be alive. Very simply, Gail went to the supermarket and bought an apple. She bought
several types of apples until she decided which had the taste she preferred (green
apples). Then she moved on to chocolate. It was an extraordinary day when she
came into the office, smiling shyly and announced: “I like dark chocolate.” Ever
since that moment, the therapist has kept a stash of dark chocolate Hershey kisses in
her office (Nurturing and Benevolent Demanding).
Subsequently, Gail went to school to change career directions. She dated and
rose up the ladder of career success while the therapy focused on increasing inter-
personal effectiveness skills. Gail and her therapist “rewrote” Gail’s narrative in
terms of what had happened during the years that Gail had lost to mental illness.
Gail was able to embrace a “watered down” version of her struggles that she felt
comfortable sharing in her new relationships with friends, co-workers, and,
finally, a man she truly fell in love with. Currently, Gail has been married for sev-
eral years, has children, and has recently purchased a house. She continues to
come for sessions sporadically to tweak her emotional reactions to life as it hap-
pens around her and to actively engage in problem-solving for the hurdles that
come her way.
Case Example #2
Meredith was a woman in her mid-30s who came to treatment after an arrest for
DUI which may have also been an unintended suicide attempt. This dramatic inci-
dent followed a chaotic breakup with a man whom she was dating; she presented as
dialectically ashamed and enraged at the life that she found herself living. She had
a history of chaotic relationships with men, distant relationships with women, and a
resentful/dependent relationship with her parents who were alternated between
being abusive and being neglectful. Meredith was educated at a prestigious college,
exceptionally bright, yet suffered from feeling inadequate.
“I don’t understand why I am not married,” she told me in her first session, “I
know plenty of fat and ugly women who are married and have children, there is no
reason why I don’t have either!” Her therapy goal was singular: to meet someone,
fall in love, and have a child. What made this goal difficult is that Meredith did not
outwardly present herself as loveable. Meredith moved through the world in an
abrasive manner. She made the therapy center’s front desk staff anxious. She
demanded rather than asked for things that she wanted and seemed to be continu-
ously on the offensive. This stance, which seemed offensive, but truly served the
function of defending her from being hurt or being told “no,” made it difficult to
suggest areas in which she could potentially be more skillful. Thus, a primary goal
of the treatment was to find out what was loveable about Meredith.
The therapist found herself needing to straddle the dialect of Unwavering
Centeredness and Compassionate Flexibility. The therapist found her Unwavering
Centeredness to be most effective when she spoke slowly and thoughtfully. The
therapist mindfully chose her words, as Meredith certainly experienced the world as
“a third-degree emotional burn victim” ([1], 69). This means, according to Linehan,
that Meredith’s emotional vulnerability, which was surely the result of being raised
in an abusive and invalidating environment, had made her exceptionally sensitive to
any emotional stimulation. Her rage and aggressiveness served (fairly successfully)
to cover over her anxiety and her shame so that people would not hurt or abuse her.
Underneath that tough exterior was a woman who was desperately hurt and who felt
her emotions in such an intense and paralyzing way.
Meredith’s therapy maintained the unwavering stance that she was loveable,
even if she did not feel it nor did the world perceive her as such. The therapy work
was thus to compassionately and gently identify ways in which she could adjust her
behavior toward others to show them her true self while dialectically protecting her
vulnerability. The way to proceed was incremental and with great patience.
When she was attacking toward her therapist in sessions, the therapist would
point out that, regardless of her content, the way that Meredith was speaking to the
therapist made the therapist feel badly, and so the therapist was unable to absorb
Meredith’s content. In order to teach Meredith how to be vulnerable, the therapist
modeled vulnerability. This expression of vulnerability was not always comfortable
or pleasant for the clinician, yet this intentional choice is where the therapist chose
to practice flexibility (Nurturing and Benevolent Demanding).
Linehan states “The relationship in DBT has a dual role, the relationship is the
vehicle through which the therapist can affect the therapy; it is also the therapy”
([1], p. 514). Meredith respected the therapist’s intelligence and thoughtfulness (as
mentioned earlier, the therapist was much quieter in these sessions than most and
chose her words thoughtfully). The therapist knew that Meredith held onto what the
therapist said, as Meredith would often call, not for skills coaching per se, but to
clarify a point the therapist had made in the previous session.
The therapist pointed out the ways in which Meredith’s abusive childhood had
been an invalidating environment, i.e., an environment which did not teach Meredith
that her emotions were justified, made sense, or were able to be regulated. Again,
with both compassion and flexibility, the therapist and Meredith moved toward the
goal of increasing behaviors that would allow Meredith’s gentler, more loving, and
loveable self into her current relationships and into new relationships. Meredith
built these new relationships as she moved away from her rage and her fear of
intimacy.
Case Example #3
Lisa was a 19-year-old female who had returned from a Midwestern college to her
family’s home on Long Island after a suicide attempt that led to her psychiatric
hospitalization in her college town. The events that led Lisa to take an overdose
focused proximally on interpersonal conflicts with her roommates and peers. While
this peer group had initially been a source of support and camaraderie, infighting
and romantic infidelity had led the group of female peers to lash out at each other.
As alcohol use within the peer group intensified, different sides of this group started
pointing fingers at each other’s alcohol problems. With the addition of academic
stress, Lisa took an overdose of psychiatric medication and upon reporting that
overdose to her family in New York was urgently brought to the emergency depart-
ment of her local hospital center and was admitted to the psychiatric unit. After the
admission, her family had rushed to her side and had stayed with her. With great
parental effort, and effort on her own part, Lisa did finish the semester following the
inpatient hospitalization and then returned home to NY and started therapy in the
DBT program at our center.
Balancing Being Oriented to Change and Oriented to Acceptance. Dialectical
assessment refers to the idea that the clinician listens to the client’s perspective, and
yet neither aligns completely with her side nor insists on pulling her to the clini-
cian’s side. In this case, Lisa wanted to be angry at her peers, she wanted to exact
vengeance, and she wanted these peers to apologize to her. The clinician could see
the truth in her perspective. Even presupposing that the client was telling only half
of the story, there was enough incontrovertible evidence supplied to indicate that
Lisa had been scapegoated by her peer group as the “crazy one,” allowing them to
wash their hands of any wrongdoing. In such a situation, the temptation is to side
with the client. The client will reinforce this therapist behavior in any number of
ways (i.e., negative reinforcement = appearing more relaxed in session and/or argu-
ing less in session or positive reinforcement = overt compliments to the therapist for
how smart or understanding they are). The therapist is likely to rationalize “siding
with” behavior by emphasizing the need for therapeutic rapport and connection.
Both authors have done these “siding with” behaviors and find that their benefits,
however tempting in the moment, are both a) short lived and b) keep the client stuck.
The client is coming to therapy because they have not yet found a solution to the
situation in which they have found themselves. “Siding with,” conceptualized here
as being non-dialectical, keeps the client in the same place and does nothing to help
move them forward to a new and better solution, i.e., through a more dialectical
synthesis. Such actions from the therapist would be conceptualized as Oriented to
Acceptance, in that they accept the client’s perspective but in this case are only
Oriented on Acceptance. Although it was tempting to “side with” Lisa’s desire to be
angry, vengeful, and demanding of an apology, her efforts to make that happen with
her peers had only resulted in more conflict and had not solved anything for her. She
was “stuck.”
The other polar extreme may be equally tempting. The clinician sees how the
client’s demand for restitution from her peers has not been successful and instead
focuses on change strategies, i.e., trying to get her to “move on” and focus on her
future. These strategies represent an Orientation to Change. These strategies ask the
client to change her focus (i.e., stop thinking about your peers) and change her
actions (i.e., start focusing on building a new future). It was clear that Lisa had been
offered these kinds of suggestions from inpatient clinicians and family members
alike and that she resisted them. She could not leave the past behind, because it left
a question unanswered that she very much needed to find an answer to, i.e., “They
said I am the ‘crazy’ one and I did get hospitalized on an inpatient unit. Am I
crazy?” We are proposing that a situation like this requires a dialectical perspective
to get the client unstuck and to prevent a tug-of-war with the client that leads to
polarization and the conclusion often drawn by the therapist that the client is being
“willful” or is “not ready to change.” In this case with Lisa, it was proposed that she
did need to figure out the answer to her questions: “What does being hospitalized
say about me? Am I crazy? Are my former friends crazy?” The therapist proposed
to the client that she needed to figure out answers to those questions and that she
needed to do so by understanding her actions in the past (Orientation to Acceptance),
even as she also learned what new ways she would handle her emotions in the future
(Orientation to Change). By proposing the therapy task dialectically, Lisa showed
less fight to be heard and less fight to be “right,” and she showed more willingness
to move forward and engage in the therapy.
Unwavering Centeredness and Compassionate Flexibility. As the treatment con-
tinued, it became apparent that Lisa was afraid to take the chance that by returning
to college and possibly facing these peers, she would again feel out of control with
her emotions. Week to week, she would come to sessions with wildly different solu-
tions and paths that she thought she would follow. On some weeks, she talked about
returning to college but thought she would live in a different area of town; on other
weeks she proposed transferring to college on Long Island, and yet on other weeks
she proposed no college at all and just working in retail. These varying solutions
tested the mettle of the therapist’s mindfulness as emotions of frustration for the
lack of progress down one path and the anxiety for the polar extremes threatened to
hijack his ability to not try to clamp down on the situation and attempting to be more
controlling, e.g., when Lisa impulsively registered at a Long Island college.
The therapist’s middle path stance attempted to balance Unwavering Centeredness
and Compassionate Flexibility. The therapist proposed a metaphor that allowed for
both centeredness and flexibility. In a session with Lisa and her mother, the therapist
said that he was worried. He was worried that some of Lisa’s actions, pulling back
from facing the emotions about returning to the Midwest, were “shrinking her
world” and that the therapist did not want to see Lisa trapped in a world where there
were places she could not go, people she could not see, or things she could not do
because of her fear’s trap. The therapist stated that he did not think that Lisa wrap-
ping herself in “Bubble Wrap” would solve her problems. The therapist indicated
openly and clearly that he was not advocating for a specific choice about college or
work (Compassionate Flexibility) but that whatever choice was made would have to
stand up to the Bubble Wrap test such that it would be clear that the choice had not
been made simply to avoid fear (Unwavering Centeredness). Shortly afterward,
Lisa decided she did want to return to her college in the Midwest, and problem-
solving work began to help her to plan for the emotions that she would experience
when she was back on campus or better yet if she saw any peers on campus with
whom she had prior conflict.
Nurturing and Benevolent Demanding. After having made the decision to return
to her former college, Lisa still had several months before a new semester would
start and she would return to college. The therapist voiced the benefit of this time
to learn, practice, and prepare. Perhaps unsurprisingly, once the decision was
made, the client perceived the pressure to be off. Her parents were happy with her
decision, so there accurately was less pressure coming from home. And she seemed
to see the intervening time as plenty of time to do the work, “so can’t I just rest
now?” The therapist noted reductions in DBT skills group attendance and was told
that there was reduced engagement when the client did attend group. In individual
sessions, the client both metaphorically and literally sat back in her chair, often
also not completing her DBT diary card. This reaction is actually quite develop-
mentally normal for a newly turned 20-year-old and also simply makes sense fol-
lowing how intense the conflict with her parents had gotten and how stressful the
decision had been. As such, the therapist was easily able to validate the client’s
perspective and allowed for a few weeks in session of “recovery” (Nurturing) while
at the same time being specific and clear on some nonnegotiables of DBT skills
group attendance and DBT diary card completion (Benevolent Demanding). Over
time, the client had further discussions about focus on change and about what she
would need to do to be ready for the new semester. These sessions then did return
to discussion of her earlier dialectical dilemma (Emotion Vulnerability versus Self-
Invalidation – “Were my friends mean or am I crazy?”). She did re-engage and was
able to do a short summer semester class as a test run before committing to a full
course load.
Conclusion
Sitting in the boat is a concept derived from Buddhism. Sitting in the boat is a meta-
phor to describe the acceptance and change dialectic. Sitting in the boat provides a
concrete instruction for the young and eager (or old and frustrated) therapist who is
pushing for change with a client who both seems to want the change AND who
nevertheless rejects change-oriented suggestions.
In these moments in which the therapy may feel stuck, it is sometimes helpful to
imagine yourself sitting with the client, in a rowboat. Waiting. Waiting for the wind
to shift directions, waiting for the current to pick up, and waiting for journey to
shore to become both less daunting and more possible. Sitting in the boat, we wait.
We collect their diary cards, and we conduct our behavior chain analyses, and we
encourage the client to dream about what a life worth living would look like – in
color, with as much detail as possible. It is the extraordinary experience of these
authors that if one can sit in the boat with the client in this manner – maintaining a
therapeutic focus and holding a flexible, nurturing, and centered stance and vision –
the client will inevitably pick up the oar and bring their boat to the destination about
which they had dreamed.
In maintaining this metaphor, we conclude that the essence of therapeutic adher-
ence in DBT requires the willingness, confidence, and patience to sit in the boat,
with the steadfast, mindful ability to “stay the course.” That is, while getting to a
goal may require patience, it also requires navigation. A skilled and informed DBT
clinician has access both to specific tools to navigate the treatment. These tools
include the specific strategies described in this chapter –commitment strategies
(pros and cons, foot in the door, door in the face, freedom to choose, and absence of
alternatives), dialectical strategies, strategies of collaboration and target setting, and
strategic use of the consultation team.
Navigation also includes an adeptness and a facility with the therapeutic demands
required to help clients who are truly struggling and are often in genuinely desperate
crisis. It requires an ability to literally sit with patient emotions as well as provide
the centeredness and demandingness required to bring about change. While we sit
in the boat, with compassion, nurturance, and acceptance, we stay the course of
treatment with an unwavering centeredness that is both benevolently demanding
and focused on change. When a clinician and treatment can maintain these dialecti-
cal stances, the treatment is likely to be experienced as successful and gratifying
and, indeed, life changing.
Reference
1. Linehan MM. Cognitive-behavioral treatment of borderline personality disorder. New York:
Guilford; 1993.
Collaborative Care: An Effort
to Increase Behavioral Health Adherence 11
by Supporting the Primary Care Provider
Beth A. Smith and David L. Kaye
Introduction
This chapter will focus on collaborative care, an important model that addresses
many of the barriers to accessing mental health care and can improve acceptance,
adherence, and efficacy of treatment for psychiatric disorders and general medical
health conditions within primary care. There is a large burden of mental health dis-
orders in primary care, as such primary care providers continue to grow as providers
of mental health treatment. Furthermore, patients with mental health disorders uti-
lize an inordinate amount of resources for other physical health problems. Similar
to other common chronic illnesses, many patients with anxiety, depression, and
attention deficit hyperactivity disorders receive treatment in the primary care set-
ting. Effectiveness of this mental health treatment attained in primary care can be
limited by multiple factors including systems-related barriers and adherence.
Starting with the biopsychosocial model [1] and extending to traditional
consultation-liaison services, collaborating with general medical health care has
occurred in hospitals for over 75 years. In the past 20 or more years, emphasis in
collaborative care has shifted to the ambulatory setting. SAMHSA-HRSA Center
B. A. Smith (*)
Department of Psychiatry, State University of New York at Buffalo, New York, NY, USA
Department of Pediatrics, State University of New York at Buffalo, New York, NY, USA
Division Chief, Child and Adolescent Psychiatry, University at Buffalo School of Medicine,
Kaleida Health, Children’s Psychiatric Clinic, Buffalo, NY, USA
e-mail: balucas@buffalo.edu
D. L. Kaye
Department of Psychiatry, State University of New York at Buffalo, New York, NY, USA
University at Buffalo School of Medicine, Erie County Medical Center,
Department of Psychiatry, Buffalo, NY, USA
e-mail: dlkaye@buffalo.edu

https://doi.org/10.1007/978-3-030-12665-0_11
166 B. A. Smith and D. L. Kaye
for Integrated Health Solutions (https://www.integration.samhsa.gov/integrated-

care-models) has formulated three overarching types of primary care-behavioral
health-care collaboration, from coordinated, to co-located, to integrated care.
Coordinated care involves basic collaboration between providers in two separate
systems that are in different physical locations and communicate sporadically
around specific cases. Examples include the current system of care where there are
separate systems (e.g., the mental health system and the primary care system) that
communicate to varying degrees around specific patient cases. There is no formal
relationship and varying degrees of interest in each other. Co-located care involves
the placement of behavioral health-care providers at the same practice as primary
care providers, although the groups are administratively separate and communica-
tion is limited to specific shared patient care. Integrated care refers to not only co-
location of primary care and behavioral health-care providers but also their
functioning as a genuine team administratively, fiscally, and clinically. In these
cases there is one electronic medical record (EMR), one billing and scheduling
system, frequent and ongoing communication about patients, and other aspects of
the organization and office. The goal is a single system treating the whole person.
Examples of this kind of program include the Washington State Mental Health
Integration Program (MHIP) for adults (based on the IMPACT program, https://
aims.uw.edu) and the Children’s Community Pediatric Behavioral Health Service
(CCPBHS) program for the pediatric population developed at University of
Pittsburgh Medical Center [2]. The American Psychiatric Association and others
have referred to this approach as the collaborative care model.
The collaborative care model is the integration of general medical and mental
health services that typically involve the integration of care managers and consul-
tant psychiatrists, with primary care provider oversight, to manage mental health
disorders. A growing body of literature, including over 80 randomized controlled
trials, has established a robust evidence base supporting the effectiveness of collab-
orative care models for treating medical and psychiatric disorders in primary care.
Collaborative care has been associated with significant improvement in depression
and anxiety outcomes compared with usual care [3]. A meta-analysis found that
collaborative care models improve depressive symptoms, adherence to treatment,
response to treatment, remission of symptoms, recovery from symptoms, quality of
life, and satisfaction with care [4]. There is also good support for the effectiveness
of collaborative care for patients with diabetes and hypertension [5].
In child and adolescent psychiatry, for several reasons including a severe short-
age of child psychiatrists, a more prominent model has been the child psychiatry
access model. This model has been implemented in over 20 states. The model
involves providing real-time telephone access to child psychiatrists for primary care
providers (PCPs). A premium is placed on the establishment of relationships
between the community-based primary care providers and the child psychiatrists.
These programs typically provide assistance with linkage and referral as well. Many
of the programs have websites with educational and practical information, and some
provide formal education to PCPs. There is a national network of these child psy-
chiatry access programs (http://nncpap.org) that describes each of the programs.
11 Collaborative Care: An Effort to Increase Behavioral Health Adherence… 167
The first program of this type was the Massachusetts Child Psychiatry Access
Program (MCPAP) started in 2004. Another model is the Child and Adolescent
Psychiatry for Primary Care (CAP PC), a regional provider for Project TEACH in
New York state started in 2010.
Embedded in these models are multiple adherence intervention strategies. For
example, in collaborative care, treatment within primary care may offer a number of
benefits and promote adherence through increased access with greater availability
and more convenient visits, improved communication between providers, and
reduced stigma for patients receiving treatment. Further, care managers can provide
support and encouragement, assess adherence with medication taking, assist with
barriers related to acquiring the medication (e.g., cost or convenience of obtaining
refills by helping to set up automated refill systems), and provide outreach-based
interventions such as care coordination, education, or establishing a reminder
system.
To improve adherence collaborative care models must also incorporate collabo-
ration between the primary care provider, patient, and for youth the patient’s fam-
ily, which includes a shared agreement on treatment goals, realistic expectations
for treatment, and patient self-management support. Self-management support can
include assessing beliefs and knowledge about mental health issues and their rem-
edies, advising on the risks and benefits of treatment, and assisting to identify bar-
riers with targeted interventions to overcome the most important barriers to
adherence.
Collaborative Care Model
The general model for collaborative care is that mental health care is provided by a
multidisciplinary team including:
1. A primary care provider (PCP) or primary medical team. The PCP leads the col-
laborative care team. Screening and assessment occur in the primary care setting
with the goal of identifying those at risk. The team implements evidenced-based
treatments for common mental health disorders and uses disease-specific out-
come measures (e.g., depression rating scale). There is a focus on patients not
meeting their treatment goals, with a stepped care treatment approach to improve
outcomes.
2. Mental health-care manager. A nurse, licensed independent clinical social
worker, or psychologist, who is based in the primary medical clinic and trained
to provide evidence-based care coordination, brief behavioral interventions, and
support treatment interventions, such as medications initiated by the PCP. In
some models, this staff member also provides evidence-based, brief/structured
psychotherapy.
3. A mental health consultant, typically a psychiatrist. A provider who advises the
medical care treatment team with a focus on patients who present diagnostic
challenges or who are not showing clinical improvements. The psychiatrist can
provide caseload consultation to the care manager who coordinates with both
patients and the PCP. Additionally, psychiatric consultation may be provided in
person, through the use of telephone or tele-video consultation.
In terms of the clinical approach, collaborative care typically tracks each indi-
vidual’s progress using a validated rating scale. Treatment plans are individualized,
with stepped care treatment for patients who are not improving as expected. The
PCP usually makes initial adjustments in treatments, with input from the psychiatric
consultant. Patients who do not respond to treatment or have a complicating factor
(e.g., coexisting substance misuse, self-injury, suicidal ideation) can be referred for
mental health specialty care.
Several examples of successful implementation of collaborative care include
Project IMPACT (Improving Mood: Providing Access to Collaborative Treatment),
TEAMcare [6], and CAP PC (Child and Adolescent Psychiatry for Primary Care).
The IMPACT study is the largest trial of collaborative care. The trial included over
1800 patients, 60 years or older with depression, from 18 diverse primary care clin-
ics, across 5 states [7]. Half of the patients were randomly assigned to receive usual
depression care in their primary care clinic, and the other half were randomly
assigned to receive the IMPACT model of collaborative care. The IMPACT inter-
vention was provided in collaboration among the patient’s primary care provider,
depression care manager, and consulting psychiatrist. Personalized depression treat-
ment plans were developed, and the care manager monitored patient follow-up and
clinical outcomes. Protocols were in place for specialty consultation and stepped
care depression treatment for those not improving. IMPACT program patients had
greater reductions in depressive symptoms, more satisfaction with care, lower
depression severity with less functional impairment, and greater quality of life than
patients receiving usual care [8]. The IMPACT model has also been effective in
adolescent depression [9].
Child and Adolescent Psychiatry for Primary Care (CAP PC) is a multi-university
initiative that assists primary care providers across New York state to assess and
manage children and adolescents with mild-moderate psychiatric conditions [10].
CAP PC was established in 2010 with funding from the New York State Office of
Mental Health and has emphasized formal education to PCPs together with phone
consultation support, assistance with linkage and referrals, and face-to-face evalua-
tions in selected situations. CAP PC is one of the two regional providers for Project
TEACH (http://projectteachny.org) and covers 36 counties and over 80% of the
population of New York state including New York City, Long Island, Buffalo,
Rochester, and Syracuse. The other regional provider, Four Winds Hospitals, covers
the eastern portion of the state. CAP PC is unique as a collaboration of five
university-based child psychiatry divisions at the University at Buffalo, University
of Rochester, Columbia University Medical Center/NYS Psychiatric Institute,
SUNY Upstate Medical University, and the Zucker School of Medicine at Hofstra/
Northwell. Each of the five groups has a site team with two to three senior child and
adolescent psychiatrists (all on faculty at their respective institutions) and one liai-
son coordinator (minimally a master’s level mental health professional) who is
responsible for appropriate linkage and referral support for PCPs. CAP PC has one
toll-free phone line for PCPs in all covered areas and rotates coverage among the
five teams, with each team covering 1 day per week. The CAP PC team works
closely together, with weekly conference calls to coordinate planning and assure
communication and consistency across the program in clinical cases. The program
provides phone consultation and linkage/referral support in real time, Monday–
Thursday 8 am–7 pm and Friday 8 am–5 pm, as well as face-to-face consultations.
Face-to-face evaluations (FTF) are offered for those cases in which the additional
guidance obtained from a direct consultation would allow the PCP to be able to
manage the patient within the primary care setting. The FTFs are provided at our
hub sites so that no family has to travel >2 hours to get to the evaluation. The evalu-
ations are completed by one of the CAP PC site child psychiatrists within 2 weeks
of referral with written reports to the PCP within 2 days after the consultation. The
program offers telepsychiatric evaluations for families who live more than an hour
away from one of our hubs. The program does not offer FTFs for urgent or emer-
gency situations or cases that clearly belong in the mental health system. For these
cases CAP PC assists in linkage and referral to the appropriate level of care.
Additionally, CAP PC child psychiatrists have continuously reached out to connect
with practicing PCPs in the community across the areas covered. To date the pro-
gram has provided 10,640 consultations and 729 face-to-face evaluations for PCPs.
CAP PC has also provided an array of formal education, including an intensive
28 hour CME educational program developed by the REACH Institute (http://there-
achinstitute.org) to over 800 PCPs across New York. This intensive, highly interac-
tive, team-taught (including child psychiatrists, PCPs, and other mental health
providers) training program differs from typical continuing medical education in
that it targets clinical skills development and actual practice change, rather than
simply imparting new factual information. The program consists of 16 CME hours
of training, spread over 3 days, followed by 12 biweekly 1-hour case-based confer-
ence calls where participants put their newly learned skills to work. PCPs present
one of their own challenging cases to a small group of peers [8–12], with group
discussion and problem-solving led by two faculty facilitators (one pediatrician or
family physician, one child psychiatrist). In 2016 the New York State Office of
Mental Health designated a statewide coordinating center to provide oversight to
the program as a whole. The Massachusetts General Hospital Psychiatry Academy
was named the statewide coordinating center and now oversees educational pro-
gramming, the website, outcomes evaluation, and marketing of Project
TEACH. Intensive training programs will continue to be offered.
Improving Adherence to Treatment
The efficacy of collaborative care for depression was evaluated in a meta-analysis

by the Cochrane Collaboration and included 79 randomized control trials of nearly
25,000 patients which found collaborative care improved clinical outcomes [3].
Further, research has shown that collaborative care has a positive impact on patient,
practitioner, and provider satisfaction, reduces health-care costs, and improves

adherence to regimens and treatment of mental health disorders. For example, col-
laborative care interventions in primary care have demonstrated significant improve-
ments in antidepressant adherence during both the acute and continuation phase of
treatment [11]. Further a systematic review and meta-analysis of 37 randomized
controlled trials that tested collaborative care models versus usual primary care
treatment in 12,355 patients with depression found collaborative care increased
adherence to antidepressant medication by nearly twofold [12].
Collaborative care may address some of the social, economic, health system-
related, and patient-related determinants of adherence as follows [13]:
1. The United States is suffering from a dramatic shortage of psychiatrists, espe-

cially child psychiatrists. A number of factors may be worsening this shortage
including a greater awareness of mental health problems and individuals seeking
treatment. In addition to recruitment efforts, new models of mental health care
such as collaborative care can assist with improving access to mental health care.
2. Stigma and attitudinal barriers may be more common than actual structural bar-
riers. Collaborative care brings mental health treatment to where people feel
comfortable receiving care and thus may reduce the stigma for some patients.
Stigma deters patients from seeking and wanting to pay for mental health care
and can fuel poor adherence. There may also be a lack of patient knowledge in
recognizing mental health disorders and negative beliefs about treatment and
mental health professionals. For example, a patient may not believe a psychia-
trist will be helpful but believe their PCP is helpful which will improve their
chances of seeking help and engaging in treatment. Moreover, it may be easier
for the patient to receive information about treatment options from a provider
they have a long-term relationship with and in a familiar setting where they feel
less anxiety or stress.
3. Insurance and concerns over cost are other leading barriers to receiving special-
ized mental health care.
4. Ideally there should be effective and ongoing communications between the PCP
and the patient’s other providers. This model fosters collaboration and coordina-
tion among professionals who are frequently part of organizational silos that
operate independently and without proper communication. It also allows for pro-
viders to work collaboratively and use their skills available from both a primary
care and specialty care perspective to address nonadherence.
Collaborative care models can also include a health-care manager that further
promotes adherence through numerous interventions. The care manager can pro-
mote patient self-management by increasing a patient’s understanding of self-
management and their use of goal setting. They can also help create accountability
for a patient’s knowledge and role in their illness. Their goals include actively
engaging patients to manage their mental health disorder and ensure adherence to
appointments and treatment regimens. Care managers provide patient support inter-
ventions from simple telephone support including answering questions and
clarifying misunderstandings, to encouraging medication adherence or establishing

a reminder system, to more complex efforts such as structured interventions (e.g.,
motivational interviewing). In some programs care managers are also involved in
assisting patients in accessing needed services such as transportation, social ser-
vices, or legal aid.
Lastly, the model can involve personalized treatment planning. The providers,
the patient, and caregiver for youth collaborate to identify and plan specific goals.
Treatment plans aimed at each goal are developed and involve patients/families in
the clinical decisions, making treatment more suitable for a patient/family, thereby
improving adherence to the clinical recommendations.
Barriers to Implementing Collaborative Care
There are several barriers to implementing collaborative care models. First, buy-in
from the organization and the PCP is critical but can be a difficult task when intro-
ducing collaborative care interventions. Most primary care providers do not feel
adequately trained to address mental health concerns, especially in children and
adolescents. There may be a lack of confidence or lack of interest, in addition to
time pressures. Next, funding and the lack of financial incentives for primary care
providers to deliver mental health care are barriers. Payment mechanisms can create
a disincentive for screening and treatment in a system where the PCP may be over-
worked and undervalued. Further, reimbursement can favor shorter office visits.
There needs to be appropriate incentives for the PCP to spend the additional time
required for patients with a mental health disorder and for treatment collaboration.
Multiple training barriers also exist. The PCP needs a thorough understanding of the
collaborative care model and what is required of them. Additionally, they need bet-
ter training and efficient tools to promote the recognition of mental health disorders
in the primary care setting. Care managers are the key to successful implementation
and can be difficult to find. They also need educational programs to prepare for their
role in collaborative care especially in relation to PCPs, the consulting psychiatrists,
and patients. Finally, the consulting physiatrist needs a thorough understanding of
the realities of primary care, the principles of collaborative care, and their role.
Psychiatric residency programs and other mental health training programs need to
prepare trainees to practice in these new models of care.
ase Examples from CAP PC: Increasing Behavioral Health

C
Adherence by Supporting PCPs
Case 1
Four years 10 month otherwise healthy female with ADHD (combined type) ini-
tially had a trial of Ritalin suspension with no benefit, so PCP switched to Vyvanse
10 mg daily. This was helpful per parents; however, upon parent changing
insurances, it was no longer approved, and so PCP switched to Adderall XR. She

had no real benefit on 5 mg dose, so PCP increased to 7.5 with partial benefit. PCP
asked if it is appropriate to continue increasing the dose further. The child and ado-
lescent psychiatrist (CAP) advised PCP on phone to assure that the child and family
were receiving psychosocial treatment, confirm that the child was actually taking
the medication, and ascertain if any adverse effects were occurring. If all this was
confirmed, the PCP was advised to consider increasing the dose to 10 mg and moni-
tor, using rating scales (e.g., Vanderbilt), physical exam, and perhaps ECG given her
young age. At follow-up the child was doing very well on Adderall XR 10 mg which
had no adverse effects, and PCP was relieved and gratified at help offered to child
and family.
Comment
ADHD is a common, bread and butter pediatric problem in the current environment.
However, treating preschool-aged children is something many PCPs are uncomfort-
able with. The American Academy of Pediatrics guidelines suggest that for this age
group, psychosocial treatment is first line. This is often not available, and PCPs are
faced with the dilemma of how to help these children and families without the ideal
resources available. Even when available the symptoms can be significant enough
that medications are warranted. This is a tough call for most PCPs, and having a
child psychiatrist available to discuss, consider the options, and make a decision in
real time is of immense help. Our best ADHD study, the MTA study [14], suggested
that a significant problem in treating ADHD is that PCPs are reticent to push doses
to achieve adequate or optimal responses. In this case the CAP consultant supported
the PCP in feeling comfortable to push the dose to an adequate range, and the child
responded well.
Case 2
Sixteen-year-old female known to her PCP all her life, now with anxiety who has
been in therapy and was started on sertraline 25 mg 2 weeks ago. She reported
improvement in anxiety but noted dilated pupils, decreased appetite (lost 2 pounds),
and headaches (mild, not every day). Past medical history was unremarkable. She
had no other signs of serotonin syndrome: BP was 100/64 and otherwise the patient
felt fine. PCP was wondering whether to stop the medications and called the phone
consultation line.
On the call, the CAP advised that these side effects may well decrease over the
next week or so and would hold the dose for now and monitor. She may be a slow
medication metabolizer, so the PCP was advised to watch for 1–2 weeks and depend-
ing on response may consider lowering the dose. If it turns out she can’t tolerate any
dose, then advise to consider a switch to an alternative SSRI, e.g., escitalopram.
One week later the CAP followed up with the PCP who reported the patient was
doing very well with anxiety symptoms on sertraline 25 mg, and her headaches
were better and the eyes dilated at times, but family no longer was concerned.
She was functioning well, and the PCP was pleased with her status. PCP was advised
to monitor with anxiety self-report symptom rating scales (e.g., SCARED or
GAD-7) and call back as needed.
Comment
Many pediatric PCPs are still uncomfortable prescribing SSRIs for anxiety or
depression. With the support and guidance provided, this PCP was able to manage
the medications for this uncomplicated teen with anxiety who otherwise would have
needed to wait months to be seen by a specialist prescriber who may or may not
have been able to make a connection with this child and family. Utilizing the CAP
PC phone line, the PCP with whom the patient and family already had a trusting
relationship was comfortably able to reassure the family and continue to provide
effective treatment for this child. Additionally, the use of evidenced-based question-
naires to monitor and track symptoms and thus improve outcomes was reviewed.
(Evidence-based clinical rating scales for screening, diagnosis, and monitoring
treatment are available at www.projectteachny.org in the resources section.)
Case 3
Fifteen-year-old male, previously an excellent student and athlete, with mild anxi-
ety in the past, came in to see PCP a few days after developing severe anxiety and
paranoia after smoking marijuana. PCP advised watchful waiting and reassurance
that this would likely pass. He presented again to PCP 3–4 weeks later with ongoing
symptoms. He reported that his family had taken him to the ER 2 weeks prior
because of these symptoms. He was evaluated and cleared medically but left before
psychiatry saw him. He continued to be distraught, agitated, overwhelmed, and
unable to attend school when he was brought back to PCP 2 weeks later. He denied
psychotic symptoms, suicidal ideation, or impulsive behaviors, but PCP was very
“worried about him all weekend.” PCP referred back to ER but the family wouldn’t
take him. PCP then called CAP PC urgently wondering what to do next. After con-
sultation with our regional liaison coordinator, he was referred to the mobile crisis
team, a service the pediatrician was unaware of. The team came to his home and
assessed that he did not need hospitalization but referred him to a partial hospital
program (PHP). Our liaison coordinator contacted the PHP and facilitated the refer-
ral and linkage, smoothing the way for the family. Within a few days, he was
accepted into the PHP program, was treated, and recovered. The CAP called back
the next week, and the PCP was relieved, very appreciative of the emotional sup-
port, the linkage with the appropriate program, and our follow-through to assure a
timely acceptance into the program.
Comment
This was a case that typically first comes to a PCP who feels inadequately trained
and ill-prepared to comfortably and competently manage this situation. Without a
program like CAP PC, PCPs are left on their own to field many difficult situations
that patients and families present. Child psychiatry access programs provide timely
referral support and expertise that better allow a PCP to rapidly respond and care for
the “whole” patient. At the same time, they are given emotional support that allows
PCPs to continue to do their work and prevent burnout.
Case 4
Fourteen-year-old female known to the pediatric group practice for years but first
visit with a new PCP was the day of the call to CAP PC. She had a long history of
obesity (BMI 44), bulimia, and psychiatric ER visits (last was over 6 months ago)
and is in alternative school for the last 2 years. She was tried on citalopram in the
past but without effect. She was then started on Prozac 4 months ago, increased to
40 mg 2 months ago, and then 60 mg 2 weeks ago because of ongoing depressive
symptoms (PHQ-9 score was 24). There was no improvement in her symptoms. She
was however attending school daily, had no behavioral problems, no suicidality, and
no acts in past. PCP did not think drug or alcohol misuse was a problem. There was
no history of recent trauma or loss. Her parents were divorced, and she lived with
her mother who is supportive. She has contact with her father, who is reportedly
diagnosed with bipolar (as is another second-degree relative). On the Child Mania
Rating Scale (CMRS), her score was 21, and patient/mom reported weekly episodes
of increased energy and not sleeping all night. PCP wondered if she has bipolar
disorder and is open to managing medications, but was not sure what to do. Patient
was linked with a therapist who she sees weekly. The family tried to link with a
child psychiatrist but there was a 3–6 months wait list. When discussed with the
CAP PC psychiatrist, the disposition was to do a face-to-face (FTF) evaluation of
this girl with the idea of clarifying the diagnosis and supporting the PCP until she
could be linked to a community CAP. PCP was very pleased with the outcome of the
consultation.
Comment
While this is not ideally a case managed by a pediatrician, PCPs not infrequently
become de facto mental health prescribers because of a lack of and maldistribu-
tion of CAPs. In this case this patient would have had to wait at least 3 months to
be seen by a CAP. The patient was linked with a therapist who was doing well
with the patient, and the PCP was willing to manage medications if provided guid-
ance and reassurance that this was not a high-risk patient with a bipolar disorder.
The CAP completed the FTF within 1 week of the call to the hotline and deter-
mined that the evidence for bipolar disorder was minimal and that there was some
but little improvement in her symptoms. The CAP recommended one more
increase in Prozac to 80 mg for 1 month and, if not helpful, then suggested a
switch to escitalopram. The CAP spoke with the PCP 1 month later, and the
patient was substantially improved on Prozac 80 mg without adverse effects. The
CAP advised the PCP to call back at any time they had questions or concerns. The
availability of the consultation line and timely FTF evaluation allowed the PCP to
meet the patient’s and family’s needs and manage this patient within the primary
care setting. Further the prompt consultation and positive response prevented
deterioration in the patient and the potential need for further emergency services
or hospitalization.
Conclusions
Organizational or systems-based adherence interventions, such as collaborative care

models, may be a sustainable strategy for improving access and promoting adher-
ence to physical and mental health treatment and thus clinically meaningful
improvements in health outcomes. These models capitalize on a primary care pro-
vider’s opportunity to leverage their relationships and trust to improve patient access
and comfort with addressing mental health needs. CAP PC is a model of pediatric
collaborative care that is rich with educational programming, developing and
strengthening linkages between primary care and mental health systems, and pro-
vides expert opinion and backup to the PCPS, so they are more likely to identify
mental health issues and initiate treatment when indicated, promoting holistic care
and enhancing adherence.
Acknowledgments We would like to express our special thanks of gratitude to our colleagues
from CAP PC: Victor Fornari, Michael Scharf, Wanda Fremont, Rachel Zuckerbrot, Carmel Foley,
Theresa Hargrave, James Wallace, George Blakeslee, Sourav Sengupta, Jennifer Petras, Jennifer
Singarayer, Alex Cogswell, Scott Falkowitz, Andrew Mietz, Eric MacMaster, and Ira Bhatia.
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The Spirit of Motivational Interviewing
for Psychiatric Nonadherence 12
Sandeep Kapoor and Bruce Goldman
Introduction
Patient adherence is a clinical challenge, especially when a patient is not following

medical guidance. Conflict within the clinician-patient partnership can drive us to
nag, scold, and feel as though our time and effort is not being appreciated.
Motivational interviewing (MI) is an evidence-based, directive approach to interact-
ing with patients in a collaborative manner, which respects their autonomy and
seeks to elicit their own internal motivation to change. The skill set of MI takes time
to develop; however, the core concepts and the spirit of MI can be put into practice
quickly. In this chapter we will allow for opportunities to self-reflect on current
practices and explore the application of MI techniques with a focus on increasing
adherence.
Healthcare is witnessing a welcome shift in our clinical culture to compassion-
ately empower those in need with the skills, drive, and motivation to improve patient
well-being. Our role to provide guidance and expertise serves as an important ele-
ment; however, we need to ensure that we also display and manifest compassion in
accepting our patients for who they are and what they believe and understand what
resources they have to accomplish their goals. This is not as easy as it sounds, espe-
cially when behavioral health is the primary area of focus. Respecting autonomy is
S. Kapoor (*)
Donald and Barabara Zucker School of Medicine at Hofstra/Northwell, Hempstead, NY, USA
Division of General Internal Medicine, Northwell Health, New Hyde Park, NY, USA
e-mail: skapoor@northwell.edu
B. Goldman
Donald and Barabara Zucker School of Medicine at Hofstra/Northwell, Hempstead, NY, USA
The Zucker Hillside Hospital, Glen Oaks, NY, USA
Addiction Services, The Zucker Hillside Hospital, Glen Oaks, NY, USA
e-mail: bgoldman1@northwell.edu

https://doi.org/10.1007/978-3-030-12665-0_12
178 S. Kapoor and B. Goldman
vital, and we need to challenge ourselves to define the limits of paternalism and to
facilitate our willingness to convey partnership.
Language Matters
“That patient is so difficult to deal with”
“Why bother, he’s non-compliant”
In 2011, 660 primary care physicians participated in a survey, “What Doctors

Wish Their Patients Knew” [1]. The number one complaint by far: Patients didn’t
take the doctors’ advice or otherwise follow treatment recommendations.
The terms “noncompliance” and “nonadherence” have been the primary descrip-
tive terms to characterize someone who is not following orders or plans set forth by
their provider and/or set forth in partnership with the patient and provider [2, 3]. The
language we utilize to describe such a characteristic is important to explore as there
may be multiple feelings and definitions conveyed. The terms “noncompliant” and
“nonadherent” and/or describing a patient as “difficult” or “resistant” further illus-
trates that there is an imbalance in the relationship, serving as a barrier to building a
trusted collaboration. The typical image associated with the terms “noncompliance”
and “nonadherence” is one of stubborn patients who perversely refuse to do what they
should do. Intrinsic to such a perception is that the patient was given all the informa-
tion necessary to make good choices, understood that information, and just decided to
make a negative choice, and there is nothing we can or should do to change that
choice” [4]. Reframing our language when speaking to fellow colleagues and when
documenting in the chart will serve as a simple step to humanize and explore the
struggle that may be leading to their motivation and ability to follow a plan.
We may feel a mix of emotions when the patients are not listening to us or fol-
lowing our recommendations. Our feelings may be transparent and end up nega-
tively impacting the therapeutic relationship. The projection of our frustration may
convey a lack of understanding, compassion, humanism, and empathy – further
challenging our ability to negotiate and advise. Our knee-jerk reactions and feelings
may portray our frustration, anger, hopelessness, and disbelief that our expert opin-
ion is not being valued or taken seriously. In short, does our frustration drive their
frustration? Does our lack of trust drive their lack of trust and hope?
Reflecting on Action
“You need to do this”
“Why are you not taking the medications as I prescribed?”
“You are not listening”
“That was not the plan”
“I won’t be able to see you anymore if you don’t listen”
If we are to reflect on what drives these emotions, we may find that our desire and
intentions may be blurred by the perceived stature of our position. If we are in the
12 The Spirit of Motivational Interviewing for Psychiatric Nonadherence 179
mindset that “we know best,” then we will not have the flexibility and agility to rethink
or reframe a patient’s motivation to comply with our directives. Traditionally, the role
of the healthcare provider has been one of power – stature in the community, as high-
lighted in many societies, but more importantly, power in the one-on-one relationships
of patient and provider. This imbalance of power may lead to the very phenomenon
we are trying to understand, prevent, and better address – nonadherence.
For us to understand and proactively seek better pathways to support our patients,
we need to first start with exploring ourselves – our perceived obligations, our per-
ceived roles of authority, and our willingness to empathize. Self-reflection and
exploration of the following can inform our journey to strengthen partnerships and
incorporate diversified approaches in supporting patients who are nonadherent:
Self-Reflection
• What is our role in this therapeutic relationship?
• What is our role in facilitating change and accepting your patient’s wishes/
thoughts?
• What are the barriers to relinquishing the need for power?
• If a patient is not following the plan, is this a personal failure for you?
If we can focus on the last bullet for a moment, what do the words “success” and
“failure” mean in the context of patient care, and do we understand if this is a tangible
emotion that can be quantified by patient compliance? Should it be? Is the failure due
to the noncompliance, or is it due to our approach in trying to mitigate the patient’s
will and our direction? Do we fully understand the multitude of issues that may be
impacting the patient’s desire and ability to consistently follow plans that were set?
As we explore the spirit of MI, and the key aspects of this art, it is important to rec-
ognize the challenge this may pose on our traditional methodologies of working to “con-
vince” someone to comply, directing the trajectory of care, and our dynamic power
struggle. The irony of MI is that success is achieved and felt once we let go of the power
and thoughtfully communicate that there is shared ownership of the conversation, the
planning, and the relationship as a whole. As we relay mutual respect and concern, the
ability to motivate the patient in a positive direction is exponentially increased.
*Don’t Miss! As you continue reading this chapter, there are multiple opportunities to:
Reflect on your current approaches
Practice communication strategies
Identify avenues to diversify your personal repertoire
Key Components of Motivational Interviewing
Motivational interviewing is an evidence-based, directive approach to interacting

with patients in a collaborative manner, which respects their autonomy and seeks to
elicit their own internal motivation to change. While it often appears to be nondirec-
tive, in that it follows the patients lead, it is navigated in the sense that we have a
direction in which we want the interview to go. We just do not go there directly, but
rather facilitate the patient’s process to come to that point of view on their own. In
so doing we reduce the opportunities for “resistance” since they would be “resist-
ing” themselves. It is important to note though, that if the patient does not come to
share the goals we have for them, we respect their right to make those decisions for
themselves and provide partnership and a safe place for them to explore their plans
further. Swanson, Pantalon, and Cohen found incorporation of a motivational inter-
viewing session into a psychiatric inpatient treatment program more than doubled
rates of initial attendance for outpatient follow-up treatment [2].
Teaching and mastering MI are both simple and very complex processes. The
principles are clear and straightforward and can be conveyed relatively quickly.
Most people when learning MI feel that they already “do MI,” and in fact this is
often true. However, clinician perceived understanding of MI does not equate to
proficiency [5].
With practice, supervision, and feedback, it becomes clear to most that consis-
tently interacting with patients in this style is more challenging than you would
think at first glance. In one study, clinicians and supervisors were more positive
about their adherence and competence than objective raters [6]. As common sense
would suggest, gaining skills in this integrated set of interviewing techniques
requires not only knowledge but also feedback and coaching over time [7]. Training
through traditional workshops is relatively ineffective in changing clinician prac-
tices [8]. Miller and Rollnick comment that they are now emphasizing the relational
aspect of MI versus the technical aspect, meaning the spirit and style [7]. As such,
it is our intent to introduce you to the guiding principles that form the foundation
and spirit of MI. Our goal is that you begin to practice this approach with treatment
ambivalent patients. Anticipating positive reactions and results, we would hope that
you become increasingly motivated to enhance and refine your technical skills to
this valuable approach to patient care.
Spirit of Motivational Interviewing
There are four pillars that encapsulate the “Spirit of MI” (PACE):
• Partnership
• Acceptance
• Compassion
• Evocation
This is the foundation upon which the four processes of MI are built:
• Engaging
• Focusing
• Evoking
• Planning
Lastly, there are many interventions and techniques that can be utilized, but we
will focus on the basic skills that guide all interactions, which are:
• Open-ended questions
• Affirmations
• Reflections
• Summaries
Change Talk
The goal of MI is to help people resolve ambivalence about change, in a specific

direction. Helping patients become more aware of the discrepancies between the
“target behavior” and what is important to them is often helpful in this process. MI
emphasizes “change talk” which has been positively correlated to actual changed
behaviors [9, 10]. Eliciting change talk in stronger and more committed language is
important, and many specific MI techniques and skills help clinicians elicit, recog-
nize, and strengthen “change talk.” These skills are reflected in the DARN-CAT
acronym [11]:
• Desire
• Ability
• Reasons
• Need
• Commitment
• Activation
• Taking steps
We will now take a closer look at the four pillars of MI and provide some exam-
ples of the approach and “skills” in action. Each section will begin with some ques-
tions for personal reflection, since the true implementation in this approach requires
that we begin to look at our practice and our relationship with patients differently.
Partnership/Collaboration
Self-Reflection
• What are some of your fears about a truly collaborative relationship with
patients?
• What are some of the possible benefits?
• On a scale of 1–10 how fully do you feel you currently collaborate with your
patients?
• Why not a lower number?
• What would it take to increase it?
Partnership is now the way medicine is being taught as opposed to the authorita-
tive/paternalistic approaches of the past. Medical education has been geared toward
teaching teamwork and communication skills as an integral part of the practice of
medicine. “Clinicians with good relationship skills will have patients who are more
satisfied and who will be more likely to adhere to treatment recommendations” [12].
This approach is very much in alignment with current “patient-centered approaches.”
Essential to this style of medicine and the physician/patient relationship is the
notion that we are partners in helping to guide patients toward better health out-
comes. This is particularly true in behavioral health, where patients must play an
active role in their own treatment. Whether that means attending therapy sessions
regularly or taking prescribed medications as agreed upon, without the “buy in” of
the patient, the physician is rendered ineffective.
In developing a partnership with patients in behavioral health, the most impor-
tant aspect is the desire to understand, from the patient’s perspective, their own
goals. Unless we clearly know and agree to work together with patients on meet-
ing their goals, there is likely to be discrepancies and frustrations in the
relationship.
Case Example
Take for example the case of a young patient diagnosed with bipolar disorder after
a manic episode characterized by delusions of grandeur, not sleeping for a week,
spending lots of money and engaging in very dangerous behaviors, all of which led
to his being psychiatrically hospitalized. While the provider’s goal is clearly to pre-
vent another manic episode, the patient’s goal is to get out of the hospital. The
patient quickly agreed to take the medications prescribed and everyone was happy.
At the first follow-up appointment, the patient revealed he had stopped the medica-
tions. The provider, fearful of the serious consequences that could follow, admon-
ishes him to resume the medications exactly as prescribed, or he will surely end up
back in the hospital. The patient again agreed to comply but failed to attend the next
follow-up appointment. He did not return because he felt scolded at the initial fol-
low-up visit. It is an understandable, instinctual reaction that the provider had. He
knew what would help stabilize the patient and very much wanted to help. However,
our “righting instinct” or desire to fix problems for our patients led to a conversation
that fostered the patient’s nonadherence and failure to return to treatment. If he had
been asked, he would have reported that he was feeling pretty good about himself
and had cut down on his daily cannabis use.
Reframing the Conversation
A better approach would be to explore where the patient was coming from, with a
sincere interest and open mindset. Why did he decide to stop the medication? What
did he make of his hospitalization? What does he think caused it, and how does he
want to try to prevent it from occurring again? This is the first stage of MI which is
engaging the patient in their own treatment and treatment planning. The open-ended
questions would allow for the patient to tell his story in his own words and would
help to focus the conversation on what was important to the patient. We might have
also learned that he felt his cannabis use was a big part of the problem which he was
motivated to address. The patient would be affirmed by acknowledging his being
serious about wanting to stay well, as evidenced by his keeping his appointment and
sharing his concerns about the medication with you. You would elicit from the
patient how he felt about his diagnosis and ask what he knew about the illness. The
provider would ask permission to share what they knew about bipolar disorder.
Then they would develop some mutually agreeable plan to move forward. Granted,
perhaps not the ideal plan, but a plan that both the provider and patient could be
comfortable with, feel is achievable, and could serve as a starting point to advancing
the conversation and planning.
In this case the patient’s main concern was not ending up back in the hospital. He
was also concerned about the lethargy caused by some of the medications pre-
scribed. He enjoyed his high energy and innovative thinking and plans for his future.
And while it never really bothers him in the moment, he was able to acknowledge
how his lack of sleep at times distorts his perceptions. He was interested in sleeping
better. He also loved cannabis and felt it was helpful in calming him, but he also
wondered if smoking constantly was contributing to his mood problems.
Put It to Practice
Provider: “So, I understand you have been through a very difficult time lately. It
must have been very upsetting to find yourself in a psychiatric hospital,
diagnosed with Bi-Polar disorder and then told to take all these medica-
tions. It is an awful lot to process. How are you feeling?”
Patient: “I am doing better, but still feel a bit worn out.”
Provider: “The medicines make you tired and take away that special energy you
always enjoyed. On the other hand, you realize that difficulty sleeping
can be a serious issue for you and you are worried that somehow your
smoking cannabis so much may not be helping you. Most of all you are
very determined not to end up back in the hospital. I so much appreciate
that you are truly motivated to stay well, being here, and talking so
honestly to me about your experiences. Would it be okay if I share with
you some of what I know about these issues and what has helped other
people?
Patient: “Yeah, sure.”
Provider: “Great, thank you. Many people do need medications at least for a
while to help them stabilize and think things through. Often the leth-
argy and “dullness” you have experienced goes away after 3–4 weeks.
Sometimes they are also dose related. We could try to resume the medi-
cation, perhaps at a lower dose until your body gets used to it, or we can
try something different that may not make you as tired. What are your
thoughts about this?
Patient: “I really didn’t like that medication. So, is it ok to try something
different?”
Provider: Okay let’s try another medication. So what ideas do you have about
better understanding cannabis’s role in all of this?
Patient: “I guess I need to cut back. Maybe not smoke during the day.”
Provider: “You would like to cut back a little. That sounds like a great plan. Okay,
so you will try not to smoke cannabis until evening and you will take
medication X for the next 2 weeks. If you have any side effects, I would
really like you to call so we can discuss it and figure out together what
to do next. I look forward to working with you to figure out how to
make sense of all you have been through and move forward with your
life.”
This approach would enhance the motivation the patient may have for preventing
further crises and developing a collaborative partnership that could be very useful
especially over time as the patient struggles with this chronic illness.
Some points to emphasize in this scenario are that by asking open-ended ques-
tions, affirming the patient’s desire to stay well, reflecting accurately back to the
patient that you understood their thoughts and feelings, asking permission to share
information or recommendations, and summarizing the interaction and plan, a trust-
ing therapeutic relationship was developed. While that alone certainly does not
guarantee adherence in behavioral health settings, it does increase the likelihood of
such since the patient was actively involved and helped formulate the plan. The ask-
ing of permission to give information and advice clearly conveys a respect for the
patient’s autonomy in that ultimately it is up to them what they are willing to try.
Even in the case of ongoing ambivalence and difficulty adhering to a plan, a strong,
respectful therapeutic relationship increases the chances that the patient will share
these struggles with us. We then can continue to assist them in moving forward. All
of this may be very difficult for providers who may feel a professional, ethical, or
even legal obligation to advise patients what to do. In those cases, the question is the
tone, style, and skills used in sharing your expertise with patients.
At this point, we must caution that there are times, particularly with patients who
may be in imminent danger or who do not have capacity, that this approach may not
be best. We must be able to assume that patients are able to make competent deci-
sions for themselves. This implies the ability to rationalize the consequences of
their behaviors in some basic way. Patients have the right to make even bad deci-
sions for themselves; in fact, they do daily, despite what we recommend. At times,
legal systems, families, and outside agencies must be called upon to help mandate
compliance with treatment when patients are putting themselves in imminent dan-
ger, at least long enough for the patient to be able to rationalize their own care. But
nonetheless, the principles of empathy, respect, compassion, and partnership can
and should still apply.
Acceptance
Self-Reflection
• How would you feel if patients decide on a path that you feel could be
detrimental?
• Would you prefer they discuss these decisions with you or rather they keep it to
themselves?
• To what extent do you feel it is your job to convince a patient to follow a specific
treatment plan?
• How comfortable are you continuing to work with someone who rejects your
recommendations, but would be willing to continue to discuss their progress
with you?
Acceptance implies that we can meet patients where they are at and have the
confidence and hope that they will get to where they need to and want to go. This
is done with guidance and support from us as opposed to directives. First and
foremost, we must convey the absolute worth of the patient, regardless of the deci-
sions and choices they make in their lives. We work hard to understand what
drives those decisions, and as we do so, we begin to validate and affirm their
values and desires.
We consistently convey that the patient must make decisions for themselves, and
they can and will figure it out as they go; sometimes it will be easier for them and
sometimes harder. But most will figure it out in due time. The most essential ingre-
dient is trying to accurately understand and convey back to the patient that you
understand what they are experiencing, feeling and thinking from their own unique
background.
MI teaches us to convey reflections to patients in declarative statements, as
opposed to softening it with adjectives and putting it as a question.
Put It to Practice
Patient: “When I was young and really needed my parents, they were busy
fighting or drinking. I pretty much was on my own”
Provider: “Your family really let you down when you needed them the most and
that really hurts”
Patient: “Yes, it really does. It makes me determined to do everything I can to
always be there for my daughter. That’s really what motivates me to
keep working to get better.”
Expanding on the thoughtful approaches to build partnership, the actions of
accepting patients where they are, and conveying via reflections that you understand
what they are feeling, can lead to impactful rapport building.
Compassion
Self-Reflection
• How do we reconcile patients with differing life experiences and values?
• How important is it that we understand our patient’s struggles?
• Is it more important that patients follow effective treatment protocols or that they
do not feel judged?
While it is true that some people have a natural way of connecting to people that
is sincere and compassionate, it is also true that professionals can learn to be more
empathetic and compassionate. A big part of compassion is the ability to put your-
self not only in someone else’s shoes but also into the complexities of their life
experiences. We oftentimes perceive and unconsciously judge others by our own
points of reference. It is extremely important in the spirit of MI that we work to
reduce this tendency. For example, a very experienced therapist, with training and
some technical skills in MI recently recounted an interaction with a patient who had
a long history of heroin addiction and whose children were removed from her by
protective services. The therapist, to help clarify the patient’s conflicting wishes and
motivate change behavior, said to the patient “Your choice is simple; if you continue
to use heroin you will not be able to have custody of your children. And that is okay
if you choose drugs over your children.” The therapist repeated this to others mul-
tiple times, feeling this was a reality and that she was being very effective and
person-centered in acknowledging the patient’s choice. The intervention was very
judgmental in tone. The comment would most likely elicit shame.
Put It to Practice
Patient: “I am so angry those people at Child Protective Services just zoomed in

and took my children away from me. They are my kids! What gives
them the right to do that? They don’t know me and what I am about.”
Provider: “It is infuriating and scary to have your children taken away from you
like that.”
Patient: “You are not kidding. I am so angry. But more than that I am worried
for my children and how they are handling this. I just go to bed every
night saying a prayer that they will be alright and crying myself to
sleep, I miss them so much.”
Provider: “I hear how devastating this experience has been for you.”
Patient: “You know I have my problems, with drugs and heroin lately, but the
thing that I always prided myself on was taking care of my kids. I feel
so guilty that I left them alone to go and get high. I don’t know what I
was thinking.”
Provider: “Your children are what is most important to you. Yet despite that your
addiction has such I hold on you it put them in jeopardy.”
Patient: “Yes, and you can be sure I will never let that happen again. I am going
to do whatever I have to do to get better and get my kids back.”
We sometimes confuse compassion with “enabling” or not adequately providing

medical guidance. The two are not mutually exclusive. You can truly understand
how a person thinks and feels and how their life experience brings them to certain
decisions. At the same time, and with permission from the patient, we can share
with them our professional experience and knowledge.
Evocation
Self-Reflection
• How confident are you that in a supportive context that patients can and will
ultimately make good decisions for themselves?
• How much do you really want to hear about patient’s perceptions of their issues?
• How important is it to do your job well, to understand your patient’s point of
views?
Evocation is the process of really eliciting from patients their personal experi-
ences. It is very tempting, especially when feeling pressured for time, to just tell the
patient what we know and advise them what to do. After all, patients are seeing us
and paying us to provide them with professional recommendations. The issue is that
many patients simply do not follow our instructions. It is scary to ask open-ended
questions and to have patients talk about their own internal motivations to change. It
usually only takes a few more minutes, and patients are much more likely to follow
their own plans than the plans we give to them, ultimately saving time for all [13].
Put It to Practice
Patient: “I have been feeling pretty good lately. I don’t really see any difference
taking the medicine or not. And like I told you, I really hate the sexual
side effects. I am only 22 years old and it’s just not cool when I’m with
a new partner. And besides all that I just feel like a zombie all the time.
So, I stopped the medicine and I’m actually feeling much better.”
Provider: “Thank you for sharing all of this with me. I truly appreciate your hon-
esty. You say you are feeling pretty good lately. I am really glad to hear
that. Can you tell me more about how you are feeling better?”
Patient: “Sure, well for starters I do not feel so down. I have energy and I have
the desire to interact with people and do things. This is a big change
from a few weeks ago when all I wanted to do was sleep. Also, I think
the medicine was making me really groggy.”
Provider: “That is great news. It must be a big relief for you.”
Patient: “Yes, it certainly is. I thought I was going to feel depressed forever. I
was even thinking about killing myself, everything seemed so hopeless.
And now I don’t feel that way at all.”
Provider: “That is fantastic. What do you think is making the difference?”
Patient: “Well, I have been going to therapy and I think talking to others help. I
don’t think the medicine did much and that is why I stopped it. Plus I
do smoke a lot of cannabis and it seemed weird taking an anti-depressant
and then smoking all that pot. But mostly I really was freaked out the
other night when sexually things just did not work the way they were
supposed to. That is when I decided to stop the medicine.”
Provider: “So, you were feeling better, but a little groggy. The medicine and pot
and the depression all could have been contributing?”
Patient: I am not really sure. The one thing I know is that I never want to feel so
depressed again and end up in the hospital or worse. I also know I have
to be able to perform sexually. To be honest I think I am smoking too
much pot and really want to cut back.”
Provider: “Is it okay if I share some information with you about depression?”
Patient: “Definitely”
Provider: “Usually when patients have a major depression like you did they need
to stay on medications for 3–6 months at which point it could be re-
assessed. I hear that you did not like the grogginess and sexual side
effects. Could we talk some more about other medication options that
may not have those side effects?”
Patient: “Sure, I do not want to end up depressed again and I am willing to try
another medicine, so long as I can perform. I can even put up with some
tiredness.”
Provider: “Great, so you also mention the pot. What do you want to do about
that?”
Patient: “It might be hard for me, but I plan to only smoke at night. At least I
could be more productive during the day and get things done.”
Provider: “It sounds like a plan. We will try a new medication, you will stay in
touch and let me know of any side effects and you will attempt to smoke
cannabis only at night. We can schedule another meeting to check in
and see how things are going and re-evaluate the plan.”
Patient: “Perfect, thank you!”
Conclusion
Self-Reflection
• What do you make of the spirit and style of MI?
• To what degree do you think you currently utilize this style in your work?
• Are there specific circumstances or cases where you feel this approach would
work better than your current practice?
• How committed are you to trying some of approaches discussed?
• How confident are you that if committed you will be able to implement this style
effectively?
Motivational interviewing is a powerful technique that can be used effectively to

help patients with behavioral health disorders make better decisions for themselves.
The spirit and style of this approach is grounded in patient-centered practices that
are improving health outcomes in many fields. Through a style of partnership,
acceptance, compassion, and evocation, more productive relationships can be devel-

oped with patients over time. This is particularly critical in psychiatry, where trust
is essential for good outcomes.
While intuitive in nature, the MI approach challenges some of our preconceived
notions of practice. Ongoing self-reflection on our personal styles and beliefs can
help guide our changes in practice. This is usually an iterative process, over time
that may be filled with both frustrations and dramatic successes. It is essential to
monitor or even measure outcomes when utilizing an MI approach to help guide
ongoing care and motivate enhanced proficiency. We all can begin to enhance our
partnership with patients immediately by adapting the spirit and style of motiva-
tional interviewing in our work. Ultimately, we hope that this will motivate an ongo-
ing self-reflection on our practice with “nonadherent” patients. Nonadherence
occurs in the context of our relationship with the patient. As such patients and pro-
viders together share the responsibility for outcomes.
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Pragmatic Trials: Solving the Dilemma
of Psychiatric Nonadherence 13
Claudine Higdon, Rebecca M. Eichenbaum,
and Melissa P. DelBello
Pragmatic Clinical Trials vs. Efficacy Trials
Pragmatic or practical clinical trials compare in a randomized fashion two

acceptable treatment approaches and provide generalizable answers to important
clinical questions. They are also termed clinical effectiveness research. Sox and
Lewis state [1], “Pragmatic trials are intended to help typical clinicians and typical
patients make difficult decisions in typical clinical care settings by maximizing the
chance that the trial results will apply to patients that are usually seen in practice
(external validity).” This is in contrast to traditional or explanatory trials which
study the efficacy of a new treatment compared to a gold-standard treatment or
placebo and are carried out in a highly structured setting with frequent monitoring
under a restrictive protocol. They typically ask the question, “Will the treatment
work in an ideal setting?” Explanatory trials seek to maximize the probability that
only a specific intervention, and not chance or other factors, causes the study out-
come (internal validity) [1].
C. Higdon (*)
Child and Adolescent Outpatient Psychiatry Department, Northwell Health, Zucker Hillside
Hospital, Glen Oaks, NY, USA
e-mail: chigdon@northwell.edu
R. M. Eichenbaum
e-mail: reichenbaum@northwell.edu
M. P. DelBello
Department of Psychiatry and Behavioral Neuroscience, University of Cincinnati College
of Medicine, Cincinnati, OH, USA
e-mail: DELBELMP@UCMAIL.UC.EDU

https://doi.org/10.1007/978-3-030-12665-0_13
192 C. Higdon et al.
Twenty-five years ago, Sir Richard Peto and colleagues [2] coined the term
“large, simple trial,” synonymous with practical clinical trial, to delineate treat-
ment outcome studies which identify modest clinically relevant effects. Tunis and
colleagues [3] expanded the definition to include a diverse population of study
participants, representative of clinical practice, and measurement of broad clini-
cally relevant health outcomes. March, Silva, Compton, and colleagues [4], in their
review entitled “The case for practical clinical trials in psychiatry,” describe the
eight defining principles of practical or pragmatic clinical trials: (1) the clinical
question must be simple, relevant, and of substantial public health importance and
is typically asking which of two acceptable treatment interventions is preferable;
(2) the trial is performed under usual care or clinical practice settings; (3) there is
sufficient study power to identify small to moderate effects; (4) randomization is
used to avoid bias; (5) randomization depends on clinical uncertainty; (6) the out-
comes studied are simple and clinically relevant and are usually patient-centered
quality of life or functional outcome measures rather than disease-centered end-
points [1] commonly used in explanatory trials; (7) the assessments and treatments
employ best clinical practice; and, lastly, (8) research personnel and investigator
burden are minimal [4].
Pragmatic clinical trials (PCTs) have broad inclusion criteria and minimal exclu-
sion criteria allowing for a more representative sample so that study findings can be
generalizable. PCTs use real-world patients with comorbid illnesses, concomitant
treatments, and demographic and other risk factors that are more often excluded in
explanatory trials. Eligible patients may be defined by presumptive diagnoses rather
than confirmed ones because treatments are often initiated when diagnosis is uncer-
tain [1]. By randomizing patients to one of two acceptable treatments, the consent
process is less cumbersome, and there is greater engagement from the patient. PCTs
address patient and family concerns about treatment and ways to maximize benefits
and lessen burden/risk of treatment effects. In essence, PCTs are patient-centered.
Patients, caregivers, and all other stakeholders participate in the design and imple-
mentation of the research and provide feedback to study investigators and stake-
holders in real time. PCTs are typically embedded in usual care settings, and study
visits are done at intervals of usual follow-up. Therefore, fewer visits are required
for the patient and family. The protocol allows for greater engagement of providers,
by allowing for clinical decision-making within the rigor of the protocol. The goal
of clinical effectiveness research is to aid clinicians in deciding which treatment is
more effective for a particular individual. The results are disseminated quickly and
are able to be implemented into clinical practice within a few years. In contrast,
results from traditional explanatory trials can take up to 17 years to be incorporated
into clinical practice [5–7].
As Nikolaos Patsopoulos explains in “A pragmatic view on pragmatic trials,” the
distinction between explanatory and pragmatic trials can be blurred in real life as
some trials have both explanatory and pragmatic aspects to them [8]. Thorpe and
colleagues introduced the pragmatic-explanatory continuum summary (PRECIS)
for investigators to design trials acknowledging the explanatory/pragmatic contin-
uum in ten domains: (1) eligibility criteria, (2) flexibility of the experimental
13 Pragmatic Trials: Solving the Dilemma of Psychiatric Nonadherence 193
intervention, (3) practitioner expertise (experimental), (4) flexibility of the compari-

son intervention, (5) practitioner expertise (comparison), (6) follow-up intensity, (7)
outcomes, (8) participant compliance, (9) practitioner adherence, and (10) primary
outcomes [8, 9]. Tosh and colleagues expanded this to create a Pragmascope, which
scores a trial on a 0–5 scale with 1 being most explanatory, 5 being most pragmatic,
and 0 being unable to assess [10]. Scores are plotted on a wheel diagram for easy
visualization [10].
Patient-Centered Outcomes Research Institute
The Patient-Centered Outcomes Research Institute or PCORI is a nonprofit, non-

governmental organization authorized by Congress in 2010 whose mandate is to
improve the quality and relevance of evidence available to help patients, caregivers,
clinicians, employers, insurers, and policymakers make better-informed health
decisions [11]. PCORI’s mission is to (1) increase the quantity, quality, and timeli-
ness of useful, trustworthy information available to support health decisions; (2)
speed the implementation and use of patient-centered outcomes research evidence;
and (3) influence clinical and healthcare research funded by others to be more
patient-centered [11]. PCORI’s mandate is to engage patients, caregivers, and all
other stakeholders in the entire research process, from topic generation to dissemi-
nation and implementation of results. PCORI funds a comprehensive agenda of
high-quality patient-centered outcomes research and evaluates its impact [11].
PCORI’s charge is to also make sure the research findings are disseminated to
patients, caregivers, and clinicians to effect better health outcomes. Furthermore,
PCORI also promotes and facilitates the development of a sustainable infrastructure
for conducting patient-centered outcomes research [11].
Pragmatic Trials: A Call to Action
In 2017, the former National Institute of Mental Health Director Thomas Insel
acknowledged that psychiatric research has had limited impact on improving men-
tal health diagnosis, prognosis, or treatment [12, 13]. Addressing this very point,
Martin P. Paulus, in the December 2017 JAMA Psychiatry editorial [13], describes
evidence-based pragmatic psychiatry (EPP) as a term for the application of scien-
tific findings of and insights into mental health to improve diagnosis, prognosis, and
treatment of mental health conditions [13]. Combining evidence-based medicine
and pragmatism, EPP is aligned with the movement toward pragmatic clinical trials
and is a way to bridge competing incentives from each of the 5Ps: patients, provid-
ers, payers, policymakers, and problem-solvers (researchers) [13]. The 5Ps shared
goals are both explanation of mental health conditions and actionable information
guiding mental health assessment and treatment. Martin P. Paulus calls for includ-
ing pragmatic or real-world considerations as an essential aspect of research publi-
cations in the field of psychiatry [13].
Pragmatic Clinical Trial in Eating Disorder Population
In the way of EPP, Eisler and colleagues [14] recently published a pragmatic ran-
domized multisite superiority trial comparing two outpatient eating disorder-
focused family interventions – multifamily therapy (MFT-AN) and single family
therapy (FT-AN) [14]. Multifamily therapy, similar in principle as family therapy,
brings 5–7 families together in a group allowing family members to learn from each
other and gain support from each other. MFT has been associated with eating disor-
der symptom improvement, fewer hospitalizations, high satisfaction, and low drop-
out rates. Family therapy is an evidence-based treatment for anorexia nervosa based
on multiple randomized clinical trials. As previously described, pragmatic trials,
which can also be thought of as “superiority trials,” seek to compare two effective
treatment approaches. Thus, participants in both arms of the study are thought to
benefit by taking part. Eisler and colleagues [14] recruited 169 participants with a
diagnosis of anorexia nervosa or eating disorder not otherwise specified from six
specialist eating disorder services in the National Health Services in the UK [14].
The study by Eisler and colleagues is one of the largest randomized clinical trials of
adolescent AN, attributable to the pragmatic nature of the trial which had minimal
exclusion criteria and simplified recruitment [14].
In keeping with the patient-centered nature of pragmatic trials, families ran-
domized to the multifamily therapy arm were engaged in regular treatment at the
eating disorder services center until a multifamily cohort was formed, such that
participating in the study did not delay treatment [14]. Furthermore, in order to
minimize wait time for those randomized into multifamily therapy, groups were
comprised of patients across centers, rotating between centers, and by including
non-trial families in the groups [14]. Whereas traditional adolescent eating disor-
der studies use a patient cutoff age of 18 years old, a more naturalistic approach
was taken here to include patients ages 13–20, which better mimics real-world
practice. Inclusion criteria were a diagnosis of anorexia nervosa or eating disorders
not otherwise specified (restricting type), 86% below the median body mass index
(mBMI) for age and sex, or had lost 15% of body weight in the last 3 months [14].
Patients were excluded if they had a learning disability, psychosis, alcohol or sub-
stance dependence, or a coexisting medical condition that might impact weight
(e.g., diabetes) [14]. Patients were also excluded if felt to be medically unstable, or
had a BMI less than 67% mBMI. Given the relatively few exclusions, Eisler and
colleagues’ study can be considered largely representative of the clinical popula-
tion being studied [14]. One hundred sixty-nine adolescents were randomized, and
167 participated in the trial (2 of the originally randomized sample withdrew con-
sent); adherence rates were high, about 90% in both arms [14]. Only nine families
from each group discontinued treatment early, which was defined as attending
treatment for less than 3 months [14].
Like other pragmatic studies, Eisler and colleagues’ trial was embedded in usual
care, and the therapists providing treatment were not specifically selected for pur-
poses of the trial [14]. Rather, treatment was delivered by all the therapists routinely
providing therapy in the participating services, including trainees [14]. The
therapists did however receive training and supervision in the treatment modalities
and to an equal degree across sites, which is not unlike what would be expected in
any service providing evidenced-based treatments [14]. The trial also allowed for
patient input, another important pragmatic feature; the total amount of treatment
was not fully determined by the study protocol, such that clinicians and families
were allowed to decide on the frequency of sessions [14]. In the family therapy
group, the number and frequency of therapy sessions over a 12-month period was
determined by clinical need, starting with weekly meetings that were gradually
spread out to once every 3–4 weeks [14]. Individual sessions were included where
appropriate, and in the multifamily therapy group, families could opt to be seen in
between the group meetings, with the number of such meetings determined by clini-
cal need [14].
Overall, Eisler and colleague’s pragmatic trial highlighted the benefit of family
therapy and demonstrated additional benefit of multifamily therapy [14]. By the end
of the 12-month period, both groups showed clinically significant improvements;
60% in the family therapy group and over 75% in the multifamily group achieved a
good or intermediate outcome based on the Morgan-Russell scales [14]. Moreover,
both groups also had significant improvements in eating disorder pathology over
time as measured on the Eating Disorder Examination [14]. Satisfaction was high
among both groups. Client Satisfaction Inventory surveys were completed by 60%
of parents and 50% of young people, and more than 80% of the adolescents and
young adults who completed the survey rated their satisfaction with the treatment as
moderate to high [14]. Differences in satisfaction between the two groups were not
observed. Eisler and colleagues’ study thus serves as a good example of the power
of pragmatic trials in furthering our knowledge of effective therapies, promoting
adherence to treatment, and improving patient outcomes.
OBILITY (Metformin for Overweight and OBese ChILdren

M
with BIpolar Spectrum Disorders Treated with Second-
Generation AntipsYchotics)
A pragmatic clinical trial that is currently recruiting is Metformin for overweight

and OBese ChiILdren with bIpolar spectrum disorders Treated with
second-generation antipsYchotics or MOBILITY for short. MOBILITY is a
PCORI-funded (PCS-1406-19276; ClinicalTrials.gov Identifier: NCT02515773),
large comparative effectiveness study of metformin (MET) and a simple healthy
lifestyle intervention (LIFE) vs. LIFE alone, focusing on patient-centered out-
comes in mental health clinics throughout the United States. Second-generation
antipsychotic (SGAs) medications have shown efficacy in treating bipolar disorder
in children and adolescents, and the use of SGAs for the treatment of bipolar spec-
trum disorders is on the rise [15]. Treatment with SGAs often leads to considerable
symptom improvement, but their use is commonly associated with weight gain
which can result in treatment nonadherence [16]. The weight gain associated with
SGAs is often dramatic and places these youth at risk for metabolic syndrome and
ultimately diabetes [17]. The risk for SGA-induced weight gain is much greater in
youth than in adults [16, 18, 19]. Rates of overweight/obesity in youth with BSD
vary in studies between 45% and 80%, more than double that of the general popu-
lation [20–22]. Overweight or obese youth with BSD have a more severe illness
course, with a greater number of hospitalizations and higher rates of substance use
disorders and physical abuse, than youth with BSD who are not overweight or
obese [23]. Moreover, these youth typically become overweight or obese adults
with more medical problems and higher rates of psychiatric symptom recurrence,
hospitalizations, and suicidality [24, 25] as well as elevated morbidity and mortal-
ity [22, 26]. The weight gain associated with SGAs places these youth at risk for
dyslipidemias, insulin resistance, metabolic syndrome, and ultimately diabetes
[27]. Therefore, prevention and intervention for weight gain in youth with BSD is
of significant public health interest and clinical concern. Use of second-generation
antipsychotics (SGAs) in youth was identified as one of the top research priorities
by the Agency for Healthcare Research and Quality (AHRQ) [28].
There is a need for standardized, evidence-based approaches to manage SGA-
related weight gain [29]. Metformin (MET) has shown efficacy for reducing weight
gain in adults and youth treated with SGAs in several RCTs and meta-analyses [30–
36]. Healthy lifestyle instructions promote physical activity and dietary lifestyle
changes. Studies of older adolescents and adults treated with SGAs found that healthy
lifestyle interventions are effective for preventing weight gain, causing weight loss, and
improving quality of life particularly when used early in the course of SGA treatment
[37–41]. Gierisch and colleagues conducted a meta-analysis of studies of patients tak-
ing SGAs who were treated for weight gain and reported that adding MET was the only
intervention studied to date that improves metabolic parameters, although, “compara-
tive effectiveness studies are needed to test multi-modal strategies” [42].
In MOBILITY, children and adolescents ages 8–19 years, with a body mass
index of 85% or greater and a lifetime or current history of bipolar spectrum illness
who require continuation or initiation of SGA, are randomized in 1:1 fashion to a
standardized simple healthy lifestyle instruction with or without metformin. Given
the pragmatic nature of the trial, inclusion criteria are broad and include any lifetime
history of a bipolar spectrum illness, i.e., bipolar I disorder, bipolar II disorder,
mood disorder not otherwise specified, unspecified bipolar and related disorders,
and disruptive mood dysregulation disorder. To mimic real-world treatment set-
tings, concomitant medications are allowable, and comorbid conditions, even
autism spectrum disorders, are inclusionary, provided patients have the ability to
answer questions on a tablet.
In an effort to have a representative clinical sample found in usual care settings,
exclusion criteria are minimal and involve medical conditions or laboratory assess-
ments in which randomization is unethical (e.g., pre-existing diabetes) or treatment
with metformin is contraindicated (e.g., renal dysfunction). The primary outcome of
the MOBILITY study is to assess overall and subgroup-specific impact of metfor-
min and simple healthy lifestyle instruction versus simple healthy lifestyle instruc-
tion alone on short-term and long-term weight and metabolic health. Height, weight,
blood pressure, heart rate, and laboratory assessments, including fasting glucose,
lipid panel, insulin, and hemoglobin A1c, are assessed at baseline and 6-month fol-
low-up intervals for the duration of the 24-month study. Metabolic monitoring
guidelines follow established practice parameters [43, 44]. To date, adherence to
recommended laboratory monitoring guidelines has been evaluated, and the number
of children who meet criteria for metabolic syndrome at baseline and throughout the
study has been measured. In keeping with the pragmatic nature of the trial, patients
are not excluded if they do not follow laboratory monitoring guidelines. Therefore,
the MOBILITY data is helping us understand clinician, patient, and caregiver barri-
ers to obtaining the necessary laboratory assessments at recommended intervals. We
hope to use this information to implement strategies to assist clinicians, patients,
and caregivers in overcoming these challenges so that they may obtain the recom-
mended laboratory assessments when treatment with SGA is indicated.
MOBILITY sites include community mental health clinics in the greater Midwest
and Northeast regions of the United States. These sites are often largely unfamiliar
with conducting clinical research. The study protocol has been easily embedded in
these community practices with minimal burden on staff resources, and the use of
part-time research support staff. Championing a clinic administrator who can assist
in the identification of potential subjects and complete enrollment logs has been
vital to success of a site’s recruitment efforts. Getting the needed support from
agency leadership and clinical providers has also been paramount. Clinician ratings
are minimal and include assessing symptom ratings, overall functioning, and side
effects. Tablet-based questions about lifestyle, mood, feelings about taking medica-
tions, and adherence to recommended lifestyle instruction and to prescription medi-
cations are given to patients and caregivers. Patients and caregivers also answer
questions related to adherence barriers to taking SGAs, metformin (if applicable),
and simple lifestyle instruction. Treatment acceptability is assessed with the use of
a single-item 5-category Likert-type patient report of satisfaction with psychotropic
medication regimen (0 = not at all satisfied; 4 = very satisfied). Research visits are
done at intervals of usual clinical follow-up visits.
As an exemplar pragmatic clinical trial, MOBILITY is evidence-based prag-
matic psychiatry in practice. It aligns the 5Ps – patients, policymakers, providers,
payers, and problem-solvers – in an effort to minimize treatment burden, maximize
adherence, and thereby alleviate psychiatric morbidity. We expect the MOBILITY
data to provide further answers to the clinical effectiveness question of whether
metformin and healthy lifestyle versus healthy lifestyle alone should be standard of
care when treatment with SGA is clinically indicated for the management of patients
with a bipolar spectrum disorder. Moreover, the effect of metformin on metabolic
health and psychiatric symptoms requires further clarification in a large and gener-
alizable population, such as MOBILITY, so that relevant moderators and mediators
of metformin’s effects can be examined. Another goal of MOBILITY is to examine
the heterogeneity of treatment effects in patients who are SGA-naïve versus those
who are not. The MOBILITY data will also assess the effects of simple healthy
lifestyle instruction in an at-risk group. Ultimately, we hope that this information
aids clinicians in their decision-making to maximize the benefits and minimize the
risks of SGA treatment in vulnerable youth with bipolar spectrum disorders.
Conclusion
Pragmatic clinical trials, which aim to study the effectiveness of two acceptable treat-
ments to determine superiority within the entire study sample, as well as within sub-
sets of the sample, will become much more popular in the field of psychiatry, and
child psychiatry in particular. With the growth of pragmatic clinical trials comes a
need for more guidelines on regulatory requirements specific to them. Future research
exploring how best to balance adhering to stringent regulatory requirements neces-
sary to conduct research in vulnerable populations (youth with mental illness) yet
simultaneously designing a pragmatic clinical trial will be needed. Nonetheless,
PCTs will help move psychiatric research forward to enable clinicians to make better
treatment decisions about typical patients they encounter in real-world practice so
that treatments can be targeted, cost-effective, and more acceptable to patients and
caregivers. By determining more effective and acceptable treatments, pragmatic clin-
ical trials are one way to solve the dilemma of nonadherence to treatment, which is
particularly problematic in youth with mental health disorders.
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Technological Strategies to Address
Psychiatric Nonadherence 14
Sourav Sengupta and Michael Adragna
Introduction
Technological strategies applied to increase adherence to psychiatric treatment are

becoming the focus of research and product development. Nonadherence is a major
challenge in treating individuals with psychiatric problems. When patients are non-
adherent to their appointments, medications, or treatment plans, there are consider-
able costs and challenges for patients and health systems. In this chapter, we will
examine health system-related, condition-related, patient-related, and therapy-
related dimensions (established as key determinants of nonadherence by the World
Health Organization) [1] and technological strategies to address these challenges.
Patients struggle to make their appointments, to engage with their clinical team, or
to take their medications. Much of our efforts to address nonadherence are by neces-
sity interpersonal in nature. We spend time educating patients about their condition
and helping them understand the importance of their treatment. We work to create
an open environment so that patients will feel comfortable letting us know when
they do not understand or do not agree with an aspect of their treatment plan. We ask
how often they miss taking their medications or how often they are engaging in
psychosocial strategies to improve their health. But ultimately, our patients primar-
ily live their lives outside of our offices, clinics, and hospitals. They are busy work-
ing at jobs, taking care of children, trying to grab a quick meal, or making a trip to
the gym before work. Our treatments need to fit in to the daily lives of our patients.
For millennia, clinicians have utilized technology – from pillboxes to digital
devices – to improve access and adherence to treatments we feel are vital to our
patients’ health and well-being and make these treatments a part of their daily lives.
S. Sengupta (*) · M. Adragna

Jacobs School of Medicine at State University of New York at Buffalo, Buffalo, NY, USA
e-mail: souravse@buffalo.edu; adragna2@buffalo.edu

https://doi.org/10.1007/978-3-030-12665-0_14
202 S. Sengupta and M. Adragna
It could be argued that perhaps one of the first technological advances to promote
treatment adherence was the pill or tablet, which historians have found evidence for
as far back as 1500 BC. Instead of having to incorporate the herb or other element
into food or drink, small amounts were incorporated into something sticky that
would hold together. The Ancient Greeks called these “katapotia” (things you can
swallow) and the Romans, “pilula.” A few thousand years later, we developed gela-
tin capsules and then machine-pressed powders into pills or tablets. And with pills
and tablets came perhaps the first storage and reminder technology – the pillbox [2].
Combined, these technologies made medication palatable, portable, and private.
In the modern era, we have used telecommunication systems broadly to improve
patients’ adherence to their treatment plans. Telephone calls have reminded patients
of their upcoming appointments. Interactive voice response (IVR) systems have
reminded patients to request or pick up medication refills from their local pharma-
cies. Nursing outreach calls have encouraged patients to better monitor their symp-
toms and to take their medications as prescribed [3]. As a field, medicine has
attempted to utilize this ubiquitous technology – present in most homes and now,
pockets – to break through barriers to treatment. From pillboxes to phones, techno-
logical interventions are increasingly being used to address differing dimensions of
nonadherence – from challenges with a specific therapist to the entire health system.
Health System-Related Nonadherence
Patients with mental illness do more poorly when nonadherent to their treatment regi-
men. One of the most critical elements of treatment adherence is attendance at psychi-
atric appointments. One review estimated non-attendance rates for mental health
appointments at 33% [4]. Numerous health organizations have attempted different out-
reach strategies to address this form of nonadherence. A 2001 Cochrane review found
that any reminder, from letter to phone to text-based, was minimally more likely than
no reminder to improve attendance at an initial appointment. There was some indica-
tion that a simple letter reminder may be slightly more effective than telephone or text-
based reminders [5]. A more recent study from the United Kingdom looking at letters,
telephone prompts, and text message reminders found significant improvements for
letters and text message reminders but found a slight increase in cancellations for tele-
phone reminders. The authors hypothesized that the increased cancellations may have
been related to the option for patients to cancel or reschedule appointments. They did
note that this allowed them to schedule more new patients from their waiting list [6]. Of
note, both reminder letters and telephone reminders can require significant staff time.
Health organizations have increasingly turned to text messaging (also known as
short messaging service or SMS) systems to remind patients of their appointments.
There has been a wide penetration of mobile phones in many countries. Text mes-
saging offers a communication route that is often viewed as more direct, convenient,
immediate, and confidential than other reminder systems [7]. More than 90% of
Americans own mobile phones, with more than 80% of them using text messaging.
14 Technological Strategies to Address Psychiatric Nonadherence 203
The mobile phone industry estimates that 98% of text messages are opened by their
recipients [8]. Text messaging is also more efficient to scale up to communicate
with larger numbers of patients, reducing staff time and associated labor and mate-
rial costs. This may contribute to text messaging being a more cost-effective
reminder system [9]. A meta-analysis of randomized control trials (RCTs) compar-
ing text messaging systems to no reminders found an almost 50% increased likeli-
hood of attending appointments for those receiving text message reminders [7].
There can, of course, be implementation challenges.
Health systems have increasingly utilized telepsychiatry strategies to address
psychiatric workforce shortages, often related to the lack of trained psychiatric cli-
nicians in rural or other underserved areas. These services are often offered through
a community health center, with the psychiatrist or other mental health clinician
located remotely and visible through a web-enabled monitor. Some health systems,
insurance providers, and individual providers have also found ways to offer telepsy-
chiatric services directly in patients’ homes, usually using patients’ web-connected
computers or tablets, as a way to address nonadherence and other barriers to utiliza-
tion. Allowing patients to work with their mental health provider in the comfort of
their homes, these services are generally well tolerated by patients with equivalent
clinical outcomes. One major implementation challenge has been establishing a
sustainable reimbursement structure for these telepsychiatry services [10].
Other innovations to improve the ability of patients to get to psychiatric appoint-
ments have met with mixed success. Ride sharing (e.g., Uber, Lyft) is a technology
that allows consumers to use mobile phone applications to hail direct transportation
when and where they want to desired destinations, instead of having to physically
hail a taxi or utilize public transportation options. These services are increasingly
seen as an alternative to public transportation systems, or have been utilized in
regions without functioning public transportation systems. One criticism of these
services has been their cost to utilize. One health system attempted to utilize ride
sharing services to get patients to and from their psychiatric appointments. Although
a fair number of patients did opt to use ride sharing to get to their appointments, the
intervention did not ultimately improve adherence [11]. Many state Medicaid pro-
grams provide assistance for transportation to appointments, although there are not
many studies of their impact on nonadherence. One 2000 analysis examined the
impact of requiring prior authorization for transportation assistance for over 47,000
Medicaid recipients in Indiana. Visits to hospital-based primary care clinics dropped
16%, while visits to neighborhood health centers increased by 7%. Emergency and
urgent visits fell by 8%, and visits for medication refills fell by 18% [12]. Two stud-
ies involving patients participating in mental health and substance abuse treatment
programs found that transportation assistance improved treatment adherence,
regardless of the distance between patient and clinical site [13, 14]. Helping patients
get to their appointments seems likely to improve adherence, although potentially
with considerable costs to health and/or social support systems. A large-scale cost-
effectiveness analysis found that transportation assistance for depression and other
mental illnesses was highly cost-effective, although not cost-saving [15].
Patient-Related Nonadherence
Patients’ nonadherence is related to their understanding of their condition. When

patients understand what is happening to them, what they can expect from their
condition, and how their treatment can impact their lives, they are more engaged
and invested in their treatment course. Psychoeducation about patients’ conditions
comes in many different formats. Perhaps the most important component is how
mental health clinicians explain conditions directly to patients. But patients often
require and desire further educational resources to better understand their condi-
tions, and many turn to the Internet to educate themselves. Often, this starts with a
general query on an Internet search engine (e.g., Google, Bing, Yahoo). This can be
problematic at times, with patients directed toward sites giving erroneous or mis-
leading information. Several web-based psychoeducation resources have been
increasingly utilized by patients to better understand their conditions. Commercial
websites such as WebMD are frequently utilized by patients, with conflicting results.
Some sites provide reliable information about conditions and treatments, while oth-
ers may skew toward highlighting individuals’ anecdotal experiences. Some large
health organizations (e.g., Mayo Clinic) produce their own psychoeducation content
that is more broadly consumed by patients in other health systems and contexts.
Government websites such as those of the National Institute of Mental Health
(https://www.nimh.nih.gov) and Centers for Disease Control and Prevention in the
United States and the National Health Service (https://www.england.nhs.uk/mental-
health) in the United Kingdom are well-vetted sources of information that can be
quite useful to patients and their families.
Some pharmaceutical companies have also created web-based educational
resources (e.g., https://www.psychu.org/ by Otsuka Pharmaceuticals, http://www.
bevocalspeakup.com/ by Sunovion Pharmaceuticals). Although patients have no
doubt learned information related to their conditions, critics point to implicit and
explicit bias toward products marketed by these pharmaceutical companies. There
are also more independent social media and web forum sites, at times based in a
particular advocacy organization (e.g., Mental Health America or NAMI) or
focused on specific conditions, although there is no clear indication of how these
types of web-based resources impact nonadherence. Patients also use other more
common social media platforms (e.g., Facebook, Instagram, Reddit, Twitter,
Pinterest) to host online support groups, as well as seek and share information
about their conditions. Despite the potential for these web-based platforms to reach
a broader audience, the broader evidence for social media utilization is mixed.
While some studies have found positive aspects of social media utilization, espe-
cially when individuals are socially apprehensive [16], others have found that
social media use has contributed to worsened mental health. Studies have found
that the ease with which individuals can compare their lives with so many others
and the selection bias toward presenting primarily positive experiences on one’s
social media profile can be detrimental [17, 18].
Technological interventions are frequently developed to help individuals with
challenges they face in everyday life. With the ubiquity of mobile phones, mobile
application or “apps” have been developed to address a plethora of daily life chal-
lenges. It is no surprise that a multitude of mobile apps have been targeted toward
mental health. A 2015 World Health Organization survey estimated that nearly
30% of 15,000 mobile health apps focused on mental health diagnosis, treatment,
or support [19]. There are significant concerns, however, about low engagement
with mental health apps. The US Veteran Administration’s PTSD Coach app was
downloaded more than 150,000 times over a 3-year period, but only 80% reached
the starting screen to utilize the app and only 37% accessed one of the app’s pri-
mary content areas. It should be noted that users that did go on to utilize the
symptom management tools did have significant reductions in their PTSD symp-
toms [20]. A meta-analysis of 18 randomized controlled trials (RCTs) assessing
22 mobile apps demonstrated that using apps significantly reduced patients’
depressive symptoms compared to controls. There was an indication that these
apps worked best for individuals with mild to moderate, rather than major, depres-
sion [21]. A meta-analysis of nine RCTs evaluated the effects of mobile apps on
symptoms of subclinical and diagnosed anxiety disorders, demonstrating reduc-
tions in total anxiety after using anxiety treatment apps. Anxiety-focused mobile
apps appeared to deliver the greatest reductions in anxiety symptoms when paired
with face-to-face or Internet-based therapies [22]. A systematic review of five
studies focused on using mobile apps for patients with schizophrenia demon-
strated improved adherence, positive user experience, and broad-ranging clinical
benefits [23].
But can the use of apps improve treatment adherence? Another study examining
hundreds of medication adherence apps found that most apps utilized one of three
primary strategies to promote adherence: reminders, monitoring with personal
tracking devices (e.g., wrist-mounted pedometer), and education. Unfortunately,
less than 1% of apps examined utilized any significant evidence-based process to
inform the design or evaluation process [24]. A small RCT in 2012 found improved
adherence in patients with schizophrenia receiving SMS text message reminders to
take their medications compared to the control group [25]. A 2017 RCT in Finland
examining individually tailored text messages did not demonstrate any significant
improvements in adherence or other health outcomes (e.g., hospital admissions)
[26]. A randomized control trial in coronary heart disease patients found that a med-
ication reminder app slightly improved medication adherence compared to no app
use. Interestingly, use of a more advanced app with more features did not improve
adherence more than a basic app [27]. Small non-randomized pilot studies have
found the use of apps in targeted mental health populations to result in a high rate of
medication adherence, improvement in mental health systems, and general satisfac-
tion with the technology [28, 29].
Vignette #1
Billy is an 8-year-old boy with attention-deficit/hyperactivity disorder (ADHD),
who lives with his parents and younger sisters, and was referred to the Children’s
Psychiatry Clinic for treatment of the same by his pediatrician, who reported that
multiple stimulant- and non-stimulant-based treatments had been unsuccessful.
Billy and his mother arrived 15 minutes late for their initial appointment,
acknowledging that they had left the clinic’s “intake packet” at home. His mother
apologized and explained that she had thought the appointment was for the follow-
ing week. As his mother hastily completed another packet, Billy spoke with one of
the clinic therapists about his struggles. Billy said that he is often in trouble with his
teachers, frequently misses portions of assignments, and sometimes his peers
become annoyed with him for talking too much. When his mother joined the appoint-
ment, she impressed as warm and concerned for Billy, but flustered and hurried,
noting that she and Billy’s father both have busy careers and have a hard time
managing their schedules and those of their three children.
The therapist suggested that she meet with Billy on a weekly basis to shore up
some psychosocial interventions for ADHD before requesting psychiatric consulta-
tion. Over the next 3 weeks, some patterns emerged: Billy was usually a few minutes
late, and the family missed their fourth appointment, when Billy’s dad was to bring
him, arriving on the subsequent day by mistake. Also, it often seemed as if the ther-
apy “homework” assigned to Billy was frequently forgotten.
As these patterns continued, the therapist made two interventions with nearly
immediate results: first, for all family members to make an electronic calendar that
could be shared and synched across their multiple mobile phones and second, she
arranged for the office staff to send an automated text message to Billy’s mother the
day before the appointment. Additionally, and although too late to help Billy, she
suggested that the clinic convert its intake forms from paper to a web-based format
so that future families could submit the forms electronically.
After making some substantial progress behaviorally, the therapist sought psy-
chiatric consultation to hopefully reduce the polypharmacy to which Billy had
become accustomed. The state in which Billy resides requires all controlled sub-
stances to be logged and searchable on a state database, so the psychiatrist imme-
diately noted that Billy’s “monthly” lisdexamfetamine was only being filled about
every 45 days. Billy’s mother impressed as surprised by this, saying “I could swear
he takes all three of his focus meds every day!” It became apparent that Billy had
never really taken medications on a regular basis. The psychiatrist suggested sim-
plifying Billy’s regiment to all but a stimulant, and using a generic long-acting
variety of methylphenidate, to which Billy had previously responded well. She sug-
gested that both parents use a phone alarm every morning to remind them to give
Billy his medication. The family appreciated the simplicity of this plan.
Therapy-Related Nonadherence
Clinicians and caregivers across the ages have sought strategies to address patients’
treatment-related nonadherence. Beyond the history of the pill box described above,
there are the public health interventions utilizing directly observed therapy (DOT).
In conditions with especially concerning public health impacts (e.g., tuberculosis,
human immunodeficiency virus), community health workers interact with affected
individuals daily, directly observing them take their medications. Moreover, this
approach allowed clinicians to develop rapport with and support patients in a com-
munity setting. If individuals decline to take their medication, they can be involun-
tarily hospitalized and treated. First implemented in India and Hong Kong in the
1950s, DOT was routinized in the 1990s as the “gold standard” approach to address
concerns around nonadherence and the spread of (increasingly multidrug-resistant)
tuberculosis [30]. There are, of course, significant differences between communi-
cable diseases such as tuberculosis and psychiatric diseases. DOT is of course the
standard-of-care for administration of medications during inpatient psychiatric hos-
pitalizations and many group homes, but there are few studies looking at DOT in
psychiatric community samples. One study found that family-supervised medica-
tion administration improved adherence by about 50% [31]. A mobile phone-based
telemedicine application that combined medication administration monitoring with
other forms of symptom monitoring was found in a pre-/post-analysis to contribute
to a 60% decrease in hospitalizations over several months [32].
Researchers and clinicians have explored varying strategies in medication deliv-
ery to address nonadherence. Most closely related to DOT is the use of long-acting
injectables (LAIs) (e.g., haloperidol decanoate, Risperdal Consta). Medication is
delivered directly by a clinician via injection, generally between every 2–4 weeks,
that remains in depot form steadily releasing medication to the bloodstream through-
out that duration. The first LAIs developed were fluphenazine in the 1960s and halo-
peridol in the 1980s. Despite initial concerns regarding adverse effects, long-term
effectiveness, and ethical considerations regarding patient autonomy and prefer-
ence, LAIs have increasingly demonstrated their utility in decreasing the morbidity
of schizophrenia over time. The development of second-generation antipsychotic
LAIs has also broadened the tools available to clinicians and patients, minimizing
some of the concerns around adverse effects. Numerous randomized controlled tri-
als, systematic reviews, and meta-analyses have found LAIs superior to placebo.
Several systematic reviews and meta-analyses have found improved adherence with
LAIs when compared to oral antipsychotics, although at least one large, pooled
meta-analysis failed to find a significant difference between the forms [33].
Other technological innovations in the delivery and administration of medica-
tions include packaging interventions. Pharmacies can create blister packs in which
all the medications prescribed to be taken at specific times of a specific day are
available in one “blister” or bubble. As opposed to having to open individual medi-
cation vials for each medication prescribed, a “blister” containing all appropriate
medications for a particular time of day can be opened and taken by an individual in
one easy maneuver. A large meta-analysis found a small but significant improve-
ment in adherence across all population types utilizing packaging interventions
[34]. A more targeted RCT looking at VA patients with psychiatric illness found that
blister packs improved adherence by more than 50% [35]. Although there are simi-
larities with making up a weekly pill box, blister packs may address some of the
motivational and organizational challenges that patients with mental illness and
their caregivers may experience when planning their medication regimens.
More recent technological innovations include electronic medication packaging
interventions, sometimes called medication adherence monitoring systems
(MAMS). Examples include electronic pillboxes or web-enabled medication vial

caps. One feature all these systems share is recording when a pill is removed from
a medication container. Many also include some form of digital display, often with
audio/visual reminders to take medications as prescribed. Two studies examining
medication adherence in outpatients with schizophrenia found nearly 50% of
patients were found to be nonadherent when using a MAMS device, compared to
less than 10% when estimated by a clinician rating scale [36, 37]. This information
can prompt another round of psychoeducation or motivational enhancement or per-
haps even a change in the treatment plan. Although these interventions each utilize
different strategies, they each provide useful information about health behaviors to
psychiatric providers. Most also incorporate some aspect of timely monitoring, so
that treatment plans can be modified if significant nonadherence is apparent.
Vignette #2
Shawna is a 20-year-old young woman being seen in a psychopharmacology clinic
for treatment of irritability. Her irritability was always described as intense and
limiting to her functioning at home, at college, and more recently, in the community.
Throughout high school, when she initially came for treatment, the irritability had
led to a variety of diagnoses and treatments. First, it was considered a byproduct of
a primary attention-deficit/hyperactivity disorder (ADHD). Next, she was consid-
ered to have oppositional defiant disorder. At times, she spoke of feeling over-
whelmed by life and depressed; at other times, she described a near total lack of
problems. Various medications were prescribed in succession to these reported
problems, including stimulants, alpha agonists, serotonin reuptake inhibitors, and
antipsychotics. Sometimes, the medications seemed to help; while at other times,
they did not. Most of the time, treatments were not sustained, and changes were
made almost constantly.
Like many patients of her age that spend time between home and college, there
were some substantial discrepancies between how she presented to her “home”
psychiatrist, who had known her for a few years, and the psychiatrist that saw her
at her college. The psychiatrist at home experienced her as doing generally well,
managing the stresses of her life, and making her way through college with only the
expected level of difficulty. As a result, he would often reduce her medications. The
psychiatrist at school, however, saw her as struggling immensely and thus tended to
increase dosages.
Shawna presented to her college psychiatrist the week before finals saying she
was “manic” and “needs something stronger.” The college psychiatrist, however,
hesitated, as he was struck by the impulsivity of her request. He thus decided to call
the home psychiatrist to discuss her care. Together, they realized that Shawna’s
appointments were characterized primarily by discussion of the events in the pre-
ceding 1–2 days, which at this moment was preparation for final exams. Both were
relatively confident that her distress would pass once finals were finished.
Together, the psychiatrists made two interventions. First, they suggested to
Shawna that she track her daily mood, anxiety, and sleep with an app on her mobile
phone, which she could review with her psychiatrists in their appointments, thus
providing a more global view of her emotional states. Second, with Shawna’s con-
sent, the psychiatrists began using a secure text message system to appraise one
another of their impressions around summer vacation and other times of transition-
ing care. Between these interventions, it became apparent that Shawna had a pri-
mary anxiety disorder. What had become a constantly changing regiment of between
two and four medications, often taken inconsistently owing to lacking efficacy, were
gradually discontinued, and the psychiatrists together worked to establish an
appropriate dose of a single serotonin reuptake inhibitor. The next year went much
more smoothly.
ommon Themes and Future Directions in Technological

C
Approaches to Nonadherence
The technological approaches discussed in this chapter share many characteristics.

Foremost, any technological intervention that is not easily and readily utilized by
patients will not impact adherence. They must not contribute to (and ideally would
detract from) the traditional stigma attached to seeking mental health treatment.
Technological innovations need not be complex; in fact, simple processes and inter-
faces that keep the individual user in mind may increase the likelihood that patients,
in fact, use them. Technological interventions must be pragmatic, addressing major
impediments to adherence that prevent patients from taking advantage of optimal
treatments in their daily lives. They must be accessible, available to a broad swath
of consumers at a cost that is not a barrier to utilization. Ideally, these technological
approaches bridge the distance between the challenges of the private world of the
patient and the clinical partnership between provider and patient.
An intriguing pilot study of depressed patients in Switzerland collected, with
participants’ consent, multiple streams of sensor-based information from their
mobile phones in order to provide tailored “just-in-time” interventions based on
cognitive behavioral therapy through the Mobile Sensing and Support (MOSS) app.
Analyzing data from a phone’s accelerometer allowed the app to estimate the gen-
eral activity and exercise levels of a participant. GPS information was used to assess
whether a participant left the home or engaged in social activities. Calls, text mes-
sages, and calendar events were analyzed to determine the social connectedness of
participants. A participant struggling with neurovegetative symptoms might be
prompted via the app to take a 10-minute walk outside. Or a participant that consis-
tently felt low may receive targeted psychoeducation on cognitive disputation or
another relevant skill or topic. Participants that consistently used the app had a sig-
nificant improvement in their PHQ-9 scores [38]. Other researchers have used simi-
lar strategies utilizing passive mobile phone sensor data to predict whether an
individual may be experiencing depressive symptoms at any given time [39].
Moving beyond patient-reported data or monitoring only of medication adher-
ence, central to this method of intervention is the passive collection and analysis of
behavioral data generated by a person as he goes about his day. The focus on mobile
phone sensor data relies on a ubiquitous technology, but this does not necessarily
limit these strategies only to communication devices. Future interventions may

combine mobile phone sensor data with computer or tablet usage patterns, as well
as other wearable sensors or personal tracking devices or even a system of ingestible
biosensors imbedded into individual pills. There may develop an interface between
these monitoring and support systems and the broader digital media ecosystem,
enabling prompts and opportunities to engage in active and adaptive coping strate-
gies from a digital assistant or to connect socially with friends or family via text,
phone, or video chat.
We should note that these multimodal strategies present very real privacy con-
cerns – who gets access to what data? Perhaps clinicians and a trusted family mem-
ber might be allowed access. But what about a health insurance company that is
paying the usage fees for the app (as occurs with some medical devices today)? Or
the technology company that plans to sell user data to allow for targeted advertising
of health products? Could the data be used against app users in the event of a data
breach? Government regulation and digital health technology literacy campaigns
may be needed to help individuals navigate these new privacy pitfalls [40].
Ultimately, however, it is not difficult to imagine a scenario in which a patient strug-
gling significantly with his mental illness would be willing to share this private
information to foster a closer connection to a clinician who can then better monitor
and guide the treatment course. Research will need to continue to determine whether
these technological innovations improve adherence, clinical outcomes, and overall
functioning.
Conclusions
This chapter has reviewed technological approaches to decrease psychiatric

nonadherence. Broadly, clinicians have long been engaged in technological
approaches to improve patients’ adherence to optimal treatment plans.
Nonadherence can be related to the complexity of our health systems and asso-
ciated difficulties with appropriately accessing or utilizing care. Technologies
that have found ways to connect patients to their clinicians have had the most
success. Patients are generally more adherent when they understand their condi-
tions and have access to psychoeducation materials. Similarly, mobile apps that
extend psychoeducation, provide medication reminders, and even prompt spe-
cific therapeutic interventions can improve adherence. Innovations in the physi-
cal processes in which patients receive and take their medication, utilizing
devices like medication adherence monitoring systems, can increase the likeli-
hood that patients actually take the medication they need and intend to take.
Ultimately, strategies that combine these technological approaches into multi-
modal systems in which patients are engaged and understand their mental health
conditions lead to better patient outcomes. In the future, we can imagine that a
broad spectrum of technological strategies will continue to bridge the divide
between the private challenges of adherence to mental health treatment and the
clinical partnership between patient and provider.
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33. Brissos S, Veguilla MR, Taylor D, Balanzá-Martinez V. The role of long-acting inject-

able antipsychotics in schizophrenia: a critical appraisal. Ther Adv Psychopharmacol.
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34. Conn VS, Ruppar TM, Chan KC, Dunbar-Jacob J, Pepper GA, De Geest S. Packaging inter-
ventions to increase medication adherence: systematic review and meta-analysis. Curr Med
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36. Byerly M, Fisher R, Whatley K, Holland R, Varghese F, Carmody T, et al. A comparison
of electronic monitoring vs. clinician rating of antipsychotic adherence in outpatients with
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37. Byerly MJ, Thompson A, Carmody T, Bugno R, Erwin T, Kashner M, et al. Validity of elec-
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Closing the Gap: Where Do
We Go from Here? 15
While preparing this book, we have thought about all of the times when we have felt
our patients did not accept their diagnosis, and did not wish to follow our recom-
mendations. It has happened often. We realized that what we have viewed as psychi-
atric nonadherence may actually have been lack of acceptance of the diagnosis. We
have seen this over and over again in our clinical practices. Even when the diagnosis
and treatment are accepted, when the symptoms are in remission, the patient may
question whether they really needed to continue taking the medication. Often
relapse of symptoms and re-hospitalization may be the result of this cycle of nonad-
herence. We then began to consider what other reasons contributed to nonadherence
to treatment. We developed a preliminary list that included the most common rea-
sons for treatment non-compliance we have witnessed over the past 30 years. This
thinking led to the development of a “Psychiatric Patient Adherence Checklist” that
we believe clinicians need to pay careful attention to. Although not a validated
instrument, we think that this could become an important clinical tool to enhance
adherence and guide the clinician. We propose that this may be yet another step
toward solving the serious dilemma of psychiatric nonadherence to treatment.
1. Do the patient and the caregiver accept the diagnosis? If not, additional time
and psychoeducation need to be the focus of clinical attention. There can be no
effective treatment if the patient and the caregiver do not accept the diagnosis.
The caregiver may undermine the treatment leading to nonadherence. Time and
education need to be spent with the family to increase their acceptance of the
diagnosis in order to enhance adherence.
V. Fornari (*) · I. Dancyger

Division of Child and Adolescent Psychiatry, Department of Psychiatry, North Shore
University Hospital and The Long Island Jewish Medical Center (Including The Zucker
Hillside Hospital and Cohen Children’s Medical Center), Glen Oaks, NY, USA
e-mail: vfornari@northwell.edu

https://doi.org/10.1007/978-3-030-12665-0_15
2. Do the patient and the caregiver accept the treatment recommendations?

When the clinician recommends a treatment without clarifying whether the
patient accepts the treatment, adherence is much less likely. The clinician
needs to devote clinical time to understand whether the patient accepts what is
being recommended. Even if the patient accepts the treatment recommenda-
tions, if the caregiver does not, the treatment is not likely to be adhered to.
Attention to educating the caregiver is crucial to enhance adherence. The care-
giver may undermine the treatment by advising the patient not to follow the
recommendations. In order for adherence to occur, this needs to be understood
and addressed.
3. Has the clinician listened to and understood the patient and the caregiver ade-
quately? If the patient feels rushed or not understood, the treatment is less likely
to be adhered to. Clinicians need to make sure that the patient feels understood.
Communication skills may be one of the most important tools for clinicians to
develop and be mindful of throughout their interactions with the patient. Careful
attention to make sure that the caregiver and family feel understood by the clini-
cian is critical in order for the caregiver to support the treatment of the patient.
Are there financial reasons why the treatment is not followed? Recognizing the
economic reality of the patient and the family is important to make sure that the
treatment is feasible. Can the patient afford the cost of the treatment? Does the
clinician understand the patient’s financial circumstance? Are less expensive
options available?
4. Has the clinician been adequately empathic with the patient and the caregiver?
In order for the patient to adhere to the treatment, it is necessary that the patient
feel that the clinician is empathic toward them and their situation. Developing
humanistic qualities, including enhanced empathy, is necessary for the patient
to feel cared for and to build a trusting relationship. In order for the caregiver to
support the treatment, the caregiver needs to feel that the clinician is empathic
toward them and their situation.
5. Does the patient have self-destructive behaviors that need to be addressed in
order to enhance treatment? It is important to recognize treatment-interfering
behaviors, including self-destructive behaviors, and to determine whether dia-
lectical behavior therapy (DBT) needs to be introduced to the patient. Without
doing so, it is unlikely that the patient will adhere to the treatment.
6. Does the clinician need to motivate the patient in order for the patient to accept
the treatment? It may be important to incorporate motivational interviewing
strategies in order to enhance the motivation for change and adherence to the
treatment recommendations. Without adequate motivation, the patient is not
likely to adhere to the plan of care.
7. Is there any technology that might enhance treatment adherence? With the
advent of a variety of technical devices and software, the clinician needs to
familiarize themselves with the available technological supports to enhance
adherence. Apps and other technological developments may be useful to
enhance adherence to psychiatric care. This is a burgeoning field of
development.
15 Closing the Gap: Where Do We Go from Here? 215
8. Has the primary care provider been included by the treatment team to the
behavioral health recommendations? The primary care provider generally has
a strong relationship with the patient and may be able to support the psychiatric
plan and enhance adherence. Recognizing the importance of including the pri-
mary care provider into the conversation is critical.
9. Do the side effects from the treatment cause the patient to be nonadherent? The
patient may be embarrassed or afraid to be honest with the clinician about
adverse effects of treatment. The clinician needs to carefully assess for adverse
treatment effects.
10. Does the patient understand that when they feel better that they need to con-
tinue their treatment? A common treatment outcome is discontinuation once
symptoms are diminished. Education in advance about the importance of adher-
ence, including the timeframe of treatment, whether therapy or medication, is
critical to enhance outcome and maximize adherence.
We propose that a Psychiatric Treatment Adherence Checklist be developed in order

to guide clinicians in the care of the patient. Perhaps, this preliminary list of ten
items may serve as the beginning of a new awareness on the part of mental health
professional. We suggest that all clinicians consider asking themselves the follow-
ing two questions when the treatment is not being adhered to by the patient: (1) Do
the patient and the caregiver accept the diagnosis? (2) Do the patient and the care-
giver accept the treatment recommendations? If the answer to question number 1 or
2 is no, then we suggest the completion of the entire ten-item checklist by the clini-
cian. Future directions might include the validation of such a checklist. Careful
clinical attention to the various elements of nonadherence is critical to enhance
patient care outcomes.
Index
A course and outcomes, 18

Academy on Communication in DSM-III’s goal, 18
Health Care (ACH), 117 interpersonal relationships, 18
Activated role-modeling, 120 learning and skills development, 18
American College Health Association National neurodevelopmental and congenital
College Health Assessment, 60 conditions, 18
Anorexia nervosa (AN) patient and family perspectives, 25, 26
alcohol treatment, 40 patient-related factors
case study, 38, 39 age, 24
clinical interventions, 40, 41 caregiver characteristics, 25
clinical research, 36 clinical characteristics, 25
condition related factors, 35 pharmacotherapy, 17
cost-efficiency, 34 prevalence, 18
diagnosis, 36 psychological and medical
ego-syntonic nature, 31 disturbance, 18
etiology, 33 self-directed control, 17
family therapy, 36 symptoms, 18
health care team, 35 treatment, 19
medical complications, 34 adherence and nonadherence, 21, 22, 27
medications, 37 care delivery and components, 23, 24
NICE guidelines, 37 dose-response relationships, 19
patient related factors, 35 duration of action, medications, 22, 23
patient traits, 36 follow-up, 27
pharmacotherapy, 37 guidelines, 19
psychoeducational support, 40 medications, 19
psychopathology, 36 office-visit model, 27
psychopharmacological once-daily medications, 27
prescriptions, 36, 37 pharmacotherapy, 19–21, 24, 27
SGA medications, 37 psychoeducation, 27
social and economic factors, 34, 35 psychosocial treatments, 19
symptoms, 31, 33 therapeutic effects, 19
treatment, 32, 33, 36 Attitudinal and thematic coherence, 135
Assertive community treatment (ACT), 50
Associational memory, 135
Attention-deficit/hyperactivity disorder B
(ADHD), 130 Behavior chain analysis, 146
age-appropriate controls, 17 Behavioral dyscontrol to behavioral
caregiver characteristics, 25 control, 146
causes, 18 Behavioral health, 182

https://doi.org/10.1007/978-3-030-12665-0
218 Index
Behavioral health adherence personality disorder, 60

biopsychosocial model, 165 psychiatric disorders, 60
intervention strategies, 167 schizophrenia, 60
outreach-based interventions, 167 suicide, 60
patient self-management support, 167 treatment adherence
primary care provider clinical research, 63
collaborative care interventions, 170 definition, 61
insurance and concerns over cost, 170 engagement and attrition rates, 63
mental health consultant, 167 lifestyle changes, 63
patient self-management, 170 measurement, 61, 62
psychiatric consultation, 168 mental healthcare, 62
screening and assessment, 167 psychiatric medication, 63
stigma and attitudinal barriers, 170 sedatives and anxiolytics, 63
structured interventions, 171 treatment nonadherence, 61
training barriers, 171 behavioral health college partnership,
treatment plans, 168, 171 73–75
validated rating scale, 168 college counseling centers, 72
shared agreement on treatment goals, 167 computer-delivered interventions, 68
systems-related barriers and adherence, 165 condition-related factors, 75, 76
Behavioral Health College Partnership, 73–75 depression treatment, 72
Behavioral health recommendations, 215 healthcare provider, 71
Behavioral solution analysis, 146 learn strategies, 67
Behaviors of non-attendance, 153 logistical/financial barriers, 72
Behaviors of non-collaborativeness, 153 mental health apps, 67
Behaviors of non-compliance, 153 motivational interviewing strategies,
Bohemian models, 35 67, 70
Brief Adherence Rating Scale, 45 online programs, 67
patient-related barriers, 64, 65
patient-related recommendations,
C 65, 66
Calgary depression scale, 44 psychotropic medications, 69
Child and adolescent psychiatrist (CAP) social and economic barriers, 70, 71
advised PCP, 171–174 social and economic
Child and Adolescent Psychiatry for Primary recommendations, 71
Care (CAP-PC), 167–169 system-related barriers, 72
Child Mania Rating Scale (CMRS), 174 system-related recommendations, 73
Child Protective Services (CPS), 36 technology based interventions, 69
Child psychiatry access model, 166 telemedicine, 69
Children’s Community Pediatric Behavioral telepsychiatry, 69
Health Service (CCPBHS) program treatment-related factors, 66, 67
for the pediatric population, 166 video-conferencing software, 69
Client Satisfaction Inventory surveys, 195 Co-located care, 166
Client’s therapy interfering behaviors, 154 Communication skills training
Clinical Antipsychotic Trials of Intervention application of learnings, 108
Effectiveness (CATIE), 53 cross-sectional observational survey, 107
Clinical effectiveness research, 191 development of, 108
Collaborative care models, 170 doctor-patient interactions, 104, 105
College population group framing talk and discussion, 109
Association for University and College medical and surgical procedures, 108
Counseling Center Directors’ observational study, 107
Annual Survey, 62 patient-clinician relationship on health
mental health, 59 outcomes, 103, 106
mood disorder, 60 patient satisfaction scores, 106, 107
non-engagement, 60, 61 patients’ complaints, 105
Index 219
patients interaction, health unwavering centeredness and

professionals, 110 compassionate flexibility, 145, 155,
patient’s perception of recovery, 105 156, 158, 159, 162
perceived failures in communication, 106 Dialectical Commitment process, 152
physician communication, 107 Dialectical Communication Strategies, 154
physicians interruption, 104 Directly observed therapy (DOT), 206
qualitative data, 105 DSM IV diagnosis of Borderline Personality
readmission rates for inpatients, 106 Disorder, 157
role play with feedback, 109
Community based primary care providers, 166
Concerta™, 23 E
Coordinated care, 166 Educational strategies, 121
Countertransference, 129, 135, 140 Electroconvulsive therapy, 103
Cross-cultural communication, 107 Electronic medical records, 113
Emergency services/hospitalization, 175
End-of-life communication, 107
D European First Episode Schizophrenia Trial
DBT bullshit, 157 (EUFEST), 53
DBT Consultation Team, 154, 158 Evidence-based care coordination, 167
DBT Diary Card completion (Benevolent Evidence-based pragmatic psychiatry
Demanding), 163 (EPP), 193
DBT Skills Group, 158 Explanatory trials, 191
Depression and anxiety outcomes, 166 Exposure-based interventions, 147
Descriptive hypothesis, 141
Dialectical behavior therapy (DBT), 145, 214
acceptance and change, 152 F
DBT bullshit, 157 Face-to-face (FTF) evaluation, 169, 174
DBT Skills Group, 158 Freedom to Choose and Absence of
behavioral interventions, 147 Alternatives strategy, 149
benevolent demanding vs. nurturing,
156, 157
change strategy, 152 G
cognitive modification, 147 Generalized anxiety disorder (GAD)
commitment strategies, 150–152 diagnosis, 7
Consultation Team, 154, 158 financial cost, 9
contingency management, 147 General medical and mental health services, 166
dialectically-balanced Geriatric psychiatric population
perspectives, 145 antidepressants, 82
Diary Card completion (Benevolent medication nonadherence
Demanding), 163 antidepressants, 83
emotion-focused nature, 154 antipsychotics, 83
mindfulness, 148, 149 psychotropic medications, 82
nurturing and benevolent demanding, 145, population-based study, 82
159, 160, 162, 163 prevalence, 82
orientation to acceptance, 161, 162 psychotic disorders, 82
vs. Orientation to Change, 145 psychotropics, 82
Orientation to Change, 162 Government regulation and digital health
and Orientation to Acceptance, 155, technology literacy, 210
158, 161
pretreatment, 147, 148
self-harm, 148 H
therapist’s emotional resources, 158 Harvard Implicit Association Test, 117
therapy interfering behaviors, 153 Healthcare, 177
treatment stage conceptualization, 146, 147 Health care transition (HTC), 64
220 Index
Health economics M
cumulative economic output loss, 4 Major depressive disorder (MDD), 7
direct costs, 3 financial cost, 9
economic growth, 4 WHO World Mental Health survey, 10
family costs, 5 Massachusetts Child Psychiatry Access
healthcare expenditures, 4 Program (MCPAP), 167
hidden costs, 4 MDD, see Major depressive disorder (MDD)
human capital, 4 Median Body Mass Index (mBMI), 194
indirect cost, 3 Medical care, 116
medical conditions, 5 Medical health conditions within primary
mental health expenditures, 3 care, 165
psychiatric care, 3 Medical practice groups and hospital
public costs, 5 systems, 113
Health system-related nonadherence, Medication adherence monitoring systems
202, 203 (MAMS), 207–208
Humanism Mental health care, 165
authentic professionalism, 115 Meredith’s therapy, 160
clinical medicine, 123 Metformin for overweight and obese children
clinical training, 120 with bipolar spectrum disorders
diagnostic accuracy and adherence, 114 treated with second-generation
diagnostic impressions and treatment antipsychotics, 195–197
recommendations, 117 Mindfulness-based interventions, 147
educational content, 122 Mobile Sensing and Support (MOSS) app, 209
emotional support, 114 Mobility data, 195–197
malpractice claims, 114 Modern medicine, 113
medical care, 113 Modern psychopharmacology, 82
medical practice, 115 Mood disorder, 130
medical/psychiatric history, 114 Motivational interviewing (MI), 107
nonverbal communication, 115 acceptance, 185
patient-physician interactions, 120 ambivalence, 181
patient’s autonomy, 116 application, 177
professional development of clinicians, behavioral health disorders, 188
119, 120, 123 behavioral health settings, 184
professional relationships, 116 using brief negotiated interview, 109
shared decision-making, 117–119, 123 collaborative relationship, 181
teaching strategies and educational compassion, 186, 187
content, 120 DARN-CAT, 181
evidence-based, 177, 179
evocation, 187, 188
I healthcare, 177
IMPACT model of collaborative care, 168 interventions and techniques, 181
Integrated care, 166 PACE, 180
Interactive voice response (IVR) partnership, 182, 184
systems, 202 patient adherence, 177
Irreverent Communication, 154 patient compliance, 179
psychiatric inpatient treatment program, 180
self-reflection and exploration, 179, 189
K treatment planning, 183
Knee-jerk reactions and feelings, 178
N
L Narrative medicine
Learning communication skills, 108 applications, 132, 133
Life threatening behaviors, 146 career and interpersonal goals, 139
Index 221
cold determination suicides, 137 Pragmatic/practical clinical trials (PCTs)

constructive life change, 134 decision-making, 192
ego dysfunction, 134 eating disorder focused family
emotional content and process, 132 interventions, 194, 195
emotional reactions, 136 exclusion criteria, 192
history of present illness, 132 inclusion criteria, 192
life and emotional history, 131 patient and family concerns, 192
medical care, 132 randomization, 192
medication and psychotherapy, 134 substantial public health
pharmacological treatment, 134 importance, 192
in psychotherapy, 135 treatment efficacy, 191
thymoleptic medications, 134 treatment modalities, 195
transference and counter-transference, PreTreatment, 146
140, 141 Professionalism, 115
for treatment resistant psychiatric patients Project IMPACT (Improving Mood:
diagnostic issues, 129 Providing Access to Collaborative
differential diagnosis, 129–131 Treatment), 168
ego synthesis, 131 Psychiatric illness
emotional reactions, 130 cost of incarceration, 11, 12
mood intensity and affective family burden, 10, 11
dyscontrol, 130 financial cost, 8–10
narcissistic, 130 and physical illness, 6–8
psychosomatic illness, 130 Psychiatric Patient Adherence Checklist,
National Epidemiologic Survey of Alcohol 213–215
and Related Conditions Psychoanalysis applied to psychodynamic
(NESARC), 62 therapy, 135
National Institute for Health and Psychodynamic psychotherapy, 135
Care Excellence (NICE)
guidelines, 37
New York State Office of Mental Health, 169 Q
Noncompliance/nonadherence, 178, 189 Quality of Life Interfering
Non-suicidal self-injurious behaviors, 146 Behaviors, 146
O R
Observed Structured Clinical Examination Reciprocal Communication, 154
(OSCE), 108–110 Recovery After an Initial Schizophrenia
Obsessive Compulsive Disorder (OCD), 40 Episode Early Treatment
Organizational/systems-based adherence Program (RAISE-ETP)
interventions, 175 trials, 44
Residential treatment facility, 150
Role-play, 108
P
Partial hospital program (PHP), 173
Paternalism, 178 S
Patient centered approaches, 182 SAMHSA-HRSA Center for Integrated
Patient-Centered Outcome Research Institute Health Solutions, 165–166
(PCORI), 193 Schizophrenia
Patient related nonadherence, 204, 205 antipsychotic medications, 43
Payment mechanisms, 171 bio-psycho-social ramifications, 43
PhenX Toolkit, 45 Calgary Depression Scale, 44
Pragmascope, 193 in college students, 60
Pragmatic-explanatory continuum summary disengagement, 43
(PRECIS), 192 psychotherapies, 43
222 Index
Schizophrenia (cont.) Social psychology, 148

treatment adherence State psychiatric facility, 150
assertive community treatment, 50 Stylistic strategies, 154
clinical tools, 49 Suicide attempts, 137
cognitive adaptation training, 51
condition-related factors, 48, 51–52
court ordered outpatient treatment, 50 T
digital health feedback system, 51 Teamcare, 168
digital health technologies, 50 Technological strategies, psychiatric
electronic medication monitoring, 51 adherence
health care team and system-related cost-effectiveness analysis, 203
factors, 47 digital devices, 201
medications, 46 DOT, 207
multidimensional phenomenon, 46, 47 health systems, 201
patient-related factors, 49 mental health treatment, 209
patient-related interventions, 54, 55 patient-reported data or monitoring, 209
sensor technology, 51 psychosocial interventions, 206
social and economic factors, 46, 49 research and product development, 201
therapy-related factors, 48, 49, 52–54 Therapy interfering behaviors, 146
treatment nonadherence Transactional model, 116
engagement, 44, 45 Transference, 129, 135, 139
medication, 45 Treatment-related nonadherence, 206–208
Second generation antipsychotic (SGA)
medications, 37
Self-destructive behaviors, 214 W
Self-Involving Self-Disclosure in DBT, 154 Washington State Mental Health Integration
Self-management support, 167 Program (MHIP) program for
Skills-based communication training, 107 adults, 166
Skills-based exercises, 108 World Economic Forum (WEF), 4

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Psychiatric

ISBN 978-3-030-12664-3 ISBN 978-3-030-12665-0 (eBook)

Library of Congress Control Number: 2019935977

© Springer Nature Switzerland AG 2019

Anecdotal observations early on in my career, of patients who would not follow

Hempstead, NY, USA Victor Fornari

Hempstead, NY, USA Victor Fornari

Part I Mental Health Treatment Nonadherence

Part II What Makes a Good Doctor?

Part III Solving the Dilemma

Michael Adragna, MD Jacobs School of Medicine at State University of New York

Erika Jakobson, DO Donald and Barbara Zucker School of Medicine at Hofstra/

Sourav Sengupta, MD, MPH Jacobs School of Medicine at State University of

In this introductory chapter on psychiatric nonadherence, it is critical to appreciate

© Springer Nature Switzerland AG 2019 3

Lost Economic Growth

Psychiatric diagnosis is comorbid with a variety of somatic conditions with patients

The Impact of Psychiatric Illness

Comorbid Psychiatric and Physical Illness

have higher levels of absenteeism, lower levels of productivity, and a higher

The Financial Cost of Psychiatric Disorder

Family Burden of Psychiatric Disorder

Individuals with early-onset psychiatric disorders have both a lower probability of

proportion exceeded only by recurrent headaches/migraines, chronic pain, and

The Cost of Incarceration

community paramedics to redirect homeless individuals with serious mental illness

This chapter focuses on adherence to treatment for attention-deficit/hyperactivity

Overview of ADHD and Its Treatment

Description, Impact, and Course

To understand the consequences of suboptimal treatment for youth with ADHD, it

© Springer Nature Switzerland AG 2019 17

distractibility); and with suppressing behavioral urges that lead to disadvantageous

Characteristics of Effective Pharmacotherapy for ADHD

interruptions in treatment are to offset risks of growth suppression and to assess

Estimates of Treatment Adherence and Nonadherence

Estimates of treatment adherence depend on the method of capturing data and on

Correlates of Treatment Adherence

 edications’ Duration of Action

 are Delivery and Components

adolescents than children. Longitudinally, a high proportion of individuals receiv-

Family and Caregiver Factors

 atient and Family Perspectives on ADHD and Treatment

 uture Directions: Adherence with Interventions Other Than

Adherence with non-medication interventions is less well studied, but potentially

A fundamental challenge, however, is defining adherence for these interventions.

I mproving Outcomes by Diminishing Barriers to Adherence

3. Bonvicini C, Faraone SV, Scassellati C. Attention-deficit hyperactivity disorder in adults: a

V. Fornari (*) · I. Dancyger

© Springer Nature Switzerland AG 2019 31

How Do Patients Comply with Treatment?

Treatment refusal and nonadherence to treatment recommendations by adolescents

An Overview of AN

AN is an eating disorder characterized by an abnormally low body weight, an

 hat Is the Etiology of AN?

 edical Complications of AN

What Are the Factors That Affect Adherence?

than professional treatment guidelines, such as the American Psychiatric Association

Healthcare Team and Health System-Related Factors

 Selective Brief Review of the Literature

BMI at discharge for AN. These authors discuss strategies to improve compliance,

Addressing the Factors That Impact Adherence

What Are the Interventions to Improve Adherence?

A clearer understanding of the etiology of AN may enhance treatment outcome.

Treatment nonadherence is an especially challenging obstacle in the treatment of

Hempstead, NY, USA Victor Fornari

Hempstead, NY, USA Victor Fornari

Part I Mental Health Treatment Nonadherence

Part II What Makes a Good Doctor?

Part III Solving the Dilemma

Lost Economic Growth

The Impact of Psychiatric Illness

Comorbid Psychiatric and Physical Illness

The Financial Cost of Psychiatric Disorder

Family Burden of Psychiatric Disorder

The Cost of Incarceration

Overview of ADHD and Its Treatment

Description, Impact, and Course

Characteristics of Effective Pharmacotherapy for ADHD

Estimates of Treatment Adherence and Nonadherence

Correlates of Treatment Adherence

edications’ Duration of Action

are Delivery and Components

Family and Caregiver Factors

atient and Family Perspectives on ADHD and Treatment

uture Directions: Adherence with Interventions Other Than

I mproving Outcomes by Diminishing Barriers to Adherence

How Do Patients Comply with Treatment?

An Overview of AN

hat Is the Etiology of AN?

edical Complications of AN

What Are the Factors That Affect Adherence?

Healthcare Team and Health System-Related Factors

Selective Brief Review of the Literature

Addressing the Factors That Impact Adherence

What Are the Interventions to Improve Adherence?

The Problem of Nonadherence

Challenges for Studying Medication Nonadherence

Estimates of Medication Adherence in Schizophrenia

Factors Affecting Adherence

Social and Economic Factors

Health-Care Team- and System-Related Factors

Interventions to Improve Adherence

Social and Economic Interventions

Health-Care Team and Health System Interventions

The Current State of Mental Health on College Campuses

osts of Nonengagement and Nonadherence

Definition, Measures, and Rates of Nonadherence

Definition of Treatment Adherence

Measurement of Treatment Adherence

Rates of Mental Health Treatment Adherence in Emerging Adults

Barriers to Adherence and Recommendations for Intervention

Social and Economic Barriers

Social and Economic Recommendations

Healthcare Provider and Systems-Related Barriers

Healthcare Provider and System-Related Recommendations

Definitions of Medication Nonadherence

Impact of Medication Nonadherence

isk Factors for Medication Nonadherence in Geriatric

Vignette #1: Illness Belief

Vignette #2: Psychodynamic Factors

Vignette #3: Secondary Nonadherence