Clinical Gastroenterology and Hepatology 2017;15:986–997

AGA
White Paper AGA: The Impact of Mental and Psychosocial
Factors on the Care of Patients With Inflammatory
Bowel Disease
Eva M. Szigethy,* John I. Allen,‡ Marci Reiss,§ Wendy Cohen,k Lilani P. Perera,¶ Lili Brillstein,#
Raymond K. Cross,** David A. Schwartz,‡‡ Lawrence R. Kosinski,§§ Joshua B. Colton,kk
Elizabeth LaRusso,¶¶ Ashish Atreja,## and Miguel D. Regueiro***
*University of Pittsburgh Medical Center, Pittsburgh, Pennsylvania; ‡Division of Gastroenterology and Hepatology, Department
of Medicine, University of Michigan School of Medicine, Ann Arbor, Michigan; §University of Southern California, San Diego,
California; kAmerican Gastroenterological Association, Bethesda, Maryland; ¶Aurora Healthcare, Grafton, Wisconsin; #Episodes
of Care, Market Innovations, Horizon Blue Cross Blue Shield of New Jersey, Newark, New Jersey; **University of Maryland
School of Medicine, Baltimore, Maryland; ‡‡Vanderbilt University Medical Center, Nashville, Tennessee; §§Illinois
Gastroenterology, Chicago, Illinois; kkMinnesota Gastroenterology PA, Minneapolis, Minnesota; ¶¶Department of Psychiatry,
Allina Health, Minneapolis, Minnesota; ##Icahn School of Medicine at Mount Sinai, New York City, New York; and ***University
of Pittsburgh Medical Center, Pittsburgh, Pennsylvania

Patients with chronic medically complex disorders like
inflammatory bowel diseases (BD) often have mental
health and psychosocial comorbid conditions. There is
growing recognition that factors other than disease path-
ophysiology impact patients’ health and wellbeing. Provi-
sion of care that encompasses medical care plus
psychosocial, environmental and behavioral interventions
to improve health has been termed “whole person care”
and may result in achieving highest health value. There
now are multiple methods to survey patients and stratify
their psychosocial, mental health and environmental risk.
Such survey methods are applicable to all types of IBD
programs including those at academic medical centers,
independent health systems and those based within inde-
pendent community practice. Once a practice determines
that a patient has psychosocial needs, a variety of re-
sources are available for referral or co-management as
outlined in this paper. Included in this white paper are
examples of psychosocial care that is integrated into IBD
practices plus innovative methods that provide remote
patient management.
Keywords: Inflammatory Bowel Disease; Ulcerative Colitis;
Crohn’s Disease; Psychosocial Care; Integrated Care; Whole
Person Care; Depression; Anxiety; Patient Reported Outcomes;
Telehealth; Remote Monitoring; Alternative Payment Models;
Episode of Care.
eople who have an inflammatory bowel disease
P (IBD) including Crohn’s disease and ulcerative
colitis suffer from a chronic illness that impacts many
aspects of their lives. The burden of IBD is substantial for
both individual patients because of their debilitating
symptoms and for society because of the cost of long-
term treatment.1–3 Advances in medical care have been
significant during the last decades and have helped pa-
tients maintain or regain disease remission while
reducing the need for emergency visits and surgery.
However, traditional medical care in the United States
tends to focus on biological aspects of disease while often
ignoring psychosocial factors. There is a growing recog-
nition that high value care for patients with chronic con-
ditions must include effective management of both
biological and psychosocial factors for patients to regain
their best health and well-being.4
The American Gastroenterological Association (AGA)
Institute Governing Board recognized a need to provide
gastroenterologists with information that would help
them incorporate psychosocial aspects of IBD care into
their practices. The AGA commissioned a task force to
review current literature and identify examples of inte-
grated IBD care within both academic and community
settings. The task force performed an extensive literature
review, reached out to a sample of practices that have
developed such care, and met to identify priorities for
this report. This consensus statement summarizes find-
ings and highlights several overarching factors that, if
managed well, will enhance IBD care as follows:
 Mental health factors with a focus on essential
screening and intervention steps
 Psychosocial factors that warrant identification and
intervention. One particularly neglected area in need
of better focus is racial/ethnic factors.
Abbreviations used in this paper: AGA, American Gastroenterological
Association; EMR, electronic medical record; EOC, Episode of Care; GI,
gastrointestinal; IBD, inflammatory bowel disease; IMPACT, Improving
Mood-Promoting Access to Collaborative Care Treatment; PFC, patient
financial coordinator; PROMIS, Patient-Reported Outcomes Measure-
ment Information System.
Most current article
© 2017 by the AGA Institute
1542-3565/$36.00
http://dx.doi.org/10.1016/j.cgh.2017.02.037

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July 2017
 Health system factors including barriers to access
providers during a disease crisis, financial con-
straints for both patients and providers, and a lack of
readily available resources to deal with positive
mental health screens.
Working models of integrated care within academic
medical centers and community-based practices are pro-
vided as examples of potential solutions and sources of
information. We also briefly discuss how the current fee-
for-service reimbursement model in the United States
creates barriers to best practice and how that might be
modified. The examples mentioned herein are not
exhaustive or endorsed by the AGA, but they are priori-
tized on the basis of published evidence supporting them.
Statement of the Problem
Patients with medically complex and chronic diseases
often have comorbid mental health conditions and psy-
chosocial challenges that, if adequately addressed, are
associated with improved health outcomes.5–10 Integrating
psychosocial care into IBD practices represents an impor-
tant step toward “whole-person” care.11 For the purposes
of this review, “psychosocial” is defined as psychological
symptoms, illness perception, coping, health behaviors,
environmental stress, and social/racial/ethnic factors that
can impact disease. Psychosocial care refers to manage-
ment of these domains, provision of emotional support, and
practical advocacy for patients. “Mental health” refers to
psychiatric diagnoses and their management. “Behavioral”
interventions refer to steps that help patients manage
psychosocial and mental health challenges.
Traditional medical practices, especially those of
specialists, often ignore psychosocial care, despite
consensus that health outcomes are affected substan-
tially by such factors.6,12 Patients with IBD are known to
experience high rates of comorbid anxiety and depres-
sion, which via the brain-gut axis can influence mucosal
healing and gastrointestinal symptoms.10,11,13–17 In
addition, identification of psychiatric illnesses in IBD
patients was predictive of higher annual medical
resource utilization and IBD-related costs.18,19
Patients with IBD have estimated annual direct health
care costs of $1.7 billion, or about $12,000–$20,000 per
patient, not including indirect costs such as productivity
loss.20–22 Eighteen percent of IBD patients account for
80% of total IBD health care burden, with costliest fac-
tors being surgery and hospitalization.21,22 Although not
quantified directly in IBD patients, costs of concurrent
depression among patients with chronic disease condi-
tions have been estimated to be $210 billion annually
across the 15.5 million adults with major depression in
the United States.23
Psychosocial factors also are linked to disease course,
quality of life, and related disability.24–30 IBD patients
themselves have expressed worries about psychosocial
comorbidities, so ignoring such factors adds to patients’
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Integrating Psychosocial Care Into Your IBD Practice 987
burden.29 Effective psychosocial assessment tools and
implementing appropriate interventions for patients
with IBD need to be part of a high-quality gastroenter-
ology IBD practice.30,31
Although models of integrated IBD care have been
described, substantial cultural, practical, and financial
barriers remain. Most gastroenterologists are unfamiliar
with behavioral health resources. In addition, care
management, input from behavioral specialists, nutri-
tional guidance, and after-hour telephone support all lack
support within the current health care reimbursement
model. Gastroenterologists are not familiar with stan-
dard mental health survey tools, and most providers do
not know how their patients are faring on a day-to-day
basis. The goal of this paper is to provide background
knowledge and practical tools for gastroenterology
practices to change this paradigm.
Mental Health Factors
Even with the identification of the high burden of
psychiatric comorbidities in patients with IBD,30 inte-
gration of behavioral health specialists into IBD practices
is relatively new and still rare. Yet, recognition and
provision of basic resources for the most common
mental health conditions could markedly impact care of
IBD patients.30–32 The most prevalent mental health
conditions in patients with chronic illnesses are
depression, anxiety disorders, chronic pain, and fatigue,
so these deserve a provider’s initial focus. Several ways
to build a management program have been identified,
with the most effective (albeit the most difficult to build)
being a collaborative care model.
Collaborative care, defined as a structured intensive
coordination of care between medical and behavioral
clinicians, has been part of general primary care since the
early 2000s.25 One landmark randomized controlled trial
(Improving Mood-Promoting Access to Collaborative
Care Treatment [IMPACT]) in the United States
compared collaborative care with usual care for treat-
ment of late-life depression within primary care prac-
tices.26 One thousand eight hundred one patients were
recruited across 18 primary care clinics from 8 health
organizations in 5 states.26 Mental health treatment
consisted of 12-month access to a depression care
manager within the clinics who offered education, care
management, brief psychotherapy, and support for anti-
depressant management by the primary care physician.
Care managers were nurses or psychologists who were
supervised by both the medical team and psychiatrists.
The IMPACT intervention was associated with reduced
depressive symptoms and improved quality of life rela-
tive to usual care.26 In addition, 80 randomized
controlled trials have shown collaborative behavioral
care is more effective than usual care in reducing the
impact of behavioral factors on health. These were
summarized in a 2012 Cochrane Summary.25
988 Szigethy et al
Although collaborative care is the gold standard model
that integrates psychosocial and other important domains
(eg, nutrition) into routine medical care, we recognize
that often such an infrastructure is not available to most
gastroenterologists. However, there are less resource
intense models of integrated care that are effective. For
example, simply identifying the existence of mental health
problems in a patient (through screening) and providing a
list of behavioral resources within a patient’s health
network are an effective and acceptable first step.
Most patients with IBD consider their gastroenterol-
ogist to be their principal provider of medical care, and
as such, we should parallel traditional primary care
providers with respect to whole-person care. Because
depression, anxiety disorders, and chronic pain are the
most prevalent comorbid psychiatric disorders in pa-
tients with IBD, this paper will examine available tools
that can be incorporated into gastroenterology practices.
Available Mental Health Screening and
Assessment Tools
A summary of mental health screening and
assessment tools for the 3 most common mental health
problems (depression, anxiety, and pain) is presented in
Table 1. Included are the names of measures, key ref-
erences, scoring definitions, and the pros and cons for
each from the view of a practicing gastroenterologist.
Depression and anxiety. There are 2 broad ways that
depression and anxiety are probed: (1) symptom
severity and (2) diagnosis of psychiatric disorders
(which consists of symptom count, severity, and associ-
ated functional impairment). Some somatic depressive
symptoms (fatigue, sleep, appetite) can be attributed to
inflammation in IBD,33–35 but even these can improve
more substantially when psychological interventions are
coupled with medical therapies.33,34 Available survey
instruments for both anxiety and depression include self-
reported and clinician-reported measures. Examples of
survey tools useful to identify depressive severity and
combinations of depression and anxiety are provided in
Table 1 and referenced here.35–42
Chronic pain. Although pain is an item on many IBD
activity indices, chronic pain is such a driver for health
utilization and has such a potential for abuse that it is
important to have a systematic way to identify it and
algorithms to treat it.43,44 Chronic pain can lead to long-
term opioid use in a subset of patients and can lead
further to misuse and addiction.43,44
The most common and simplest survey instruments
for screening include the Screener and Opioid Assess-
ment for Patients with Pain–revised, a 5-question
tool,45,46 and the Current Opioid Misuse Measure, a 17-
question scale.47 Both measures can identify at-risk pa-
tients quickly, so appropriate referral or development of
an opioid contract linked to monitoring and non-opioid
treatment strategies can be implemented.43,44 Other
survey measures to assess pain severity and interference
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Clinical Gastroenterology and Hepatology Vol. 15, No. 7
are listed in Table 1 including an example of a visual
analogue scale and the Brief Pain Inventory.48–52
Management strategies for pain in digestive diseases
have been reviewed elsewhere and are beyond the scope
of this paper.53–55 It is emphasized that gastroenterolo-
gists encounter patients with chronic pain frequently and
must be prepared at least to identify pain as a significant
issue and develop referral resources for its management.
Other Mental Health Symptoms and Concerns
Fatigue and sleep disturbance can be isolated prob-
lems or linked to depression, anxiety, and pain.56–60
Survey instruments are available to help document
objective benchmarks such as hours slept, time to fall
asleep (latency), and number of awakenings.56–65 Ideal
benchmarks are average sleep of 8 hours, latency of less
than 30 minutes, and no more than 1 awakening. Sleep
outside these parameters could likely benefit from
behavioral interventions.
Other areas of patient concern include patients’ body
image (physical appearance),66,67 and an IBD-specific body
image scale has been validated.68 Another focus area is
assessing a patient’s ability to cope with their disease.69–73
There is a promising instrument called Brief COPE, con-
sisting of 14 scales with 28 total items that assess problem-
focused, emotional, and maladaptive coping.71
One newer instrument, mostly used within a research
setting, is the National Institutes of Health Patient-
Reported Outcomes Measurement Information System
(PROMIS).74,75 This is a validated, brief research tool that
captures multiple psychosocial domains, although they
have not been well-studied in routine clinical care. Studies
are beginning to develop clinical thresholds and cross-
validate PROMIS measures with other clinically used
instruments. Although PROMIS measures are not IBD-
specific, they have been validated in patients with IBD.75
The survey tools presented above are being adapted
into brief patient-reported instruments that take less than
a minute for patients to complete. Some can be completed
remotely76 or via tablets or kiosks in offices that directly
link the information to the electronic health record. If time
or resources are limited, health-related quality of life in-
struments can serve as brief surveys of sleep, fatigue, pain,
tension, depression, and other psychosocial domains. One
such instrument, the Short IBD Questionnaire, is validated
and available electronically.77 In summary, it is clear that
health-related quality of life assessments should be part of
modern IBD care,78 and most recent guidelines and quality
measurement articles emphasize this important aspect of a
gastroenterology IBD practice.79,80
Behavioral Interventions for Depression,
Anxiety, and Chronic Pain
If a practice implements a screening process for
mental health disorders, it then becomes imperative that

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Table 1. Examples of Brief Behavioral Self-report Measures and Their Clinically Useful Characteristics
For personal use only. No other uses without permission. Copyright ©2019. Elsevier Inc. All rights reserved.
Domain Measure
Depressive severity World Health Organization
Well-Being Index (WBI-5)36
Depressive severity Patient Health Questionnaire
(PHQ-2, PHQ-9),37 PHQ-938
Depressive and Hospital Anxiety and Depression
anxiety severity Scale (HADS)39–41
PHQ-441
Anxiety severity Generalized Anxiety Disorder-7
(GAD-7)42
Pain severity Visual analogue scale
Numeric rating scale48
Pain severity and Brief Pain Inventory49
interference
July 2017
Scoring Pros Cons
5-item scale Widely available Sensitivity > specificity
Scores range from 0 to 25. Open access
Scores <12 consistent with depression. Not as frequently cited.
2- or 9-item scale available Brief Specificity > sensitivity
For PHQ-9, scores range from 0 to 27, with scores Widely available and cited. PHQ-9 includes item on suicide but
>10 consistent with depression. Because the PHQ-8 does not.
ninth item assesses suicidality, some clinicians PHQ-2 has reasonable options for busy
prefer the PHQ-8, a validated measure that clinic.
avoids the suicide item. All PHQ instruments are open access.
For PHQ-2, scores range from 0 to 6, with scores
>3 consistent with depression
Two 7-item scales, one each for anxiety and High sensitivity and specificity Licensed and requires permission and
depression. Total score 42: 21 for each Widely cited. possible fee to use.
subscale Established thresholds for diagnosis of Open access and reasonable for busy
Diagnosis of either anxiety disorder or depression anxiety disorders and depression. clinic.
consistent with >10 on either subscale.
Integrating Psychosocial Care Into Your IBD Practice
Brief and validated.
Probes both depression and anxiety in 4 items.
Total of 7 items Widely available None
Scores range from 0 to 21, with scores >10 High sensitivity and specificity
consistent with anxiety disorder.
Scores 0–10 anchored from no pain to extreme Well-validated. Only measure pain intensity.
pain.
Total of 11 items Can be administered by self-report or Licensed but with permission is available
Total score made up of severity (4 items) and life interview. for clinical use.
interference (7 items) Patients identify pain anywhere in their
body on a diagram.
989
990 Szigethy et al
providers respond appropriately to patients who are
screen-positive. This raises concerns that practices
cannot easily tap behavioral resources in a timely
manner, and many providers believe that they lack the
time to address psychosocial issues. Providers also fear
liability associated with a patient who expresses suicidal
thoughts on a depression screen. A recent systematic
review for the U.S. Preventive Services Task Force out-
lines current practice around suicide screening and
treatment within a primary care context.81 Having the
names of several local mental health providers and
emergency services with availability and a crisis-line
phone number is minimally adequate.
Lack of reimbursement for integrated care is also a
barrier and will be discussed subsequently. With a national
trend toward recommending depressive screening in
medical settings, reimbursement models are evolving
including billing options for depression screening. Some
pharmacologic companies with IBD service lines offer re-
sources to support behavioral staff. Finally, psychiatrists,
psychologists, and some social workers can bill under their
own licenses and as such can support their salaries.
There is an increasing awareness that even brief
behavioral interventions for common psychiatric comor-
bidities in IBD can be beneficial.27–30 Although a compre-
hensive review of behavioral interventions is outside the
scope of this review, several practical points warrant
mention. Whenever possible, non-medication options (eg,
cognitive behavioral therapy, hypnosis, mindfulness
meditation, etc) should be first-line approaches.34,82,83
Because there is still a shortage of behavioral providers
trained in these techniques, access to such interventions
are becoming increasingly feasible by training medical
staff, using health coaches, and the growing availability to
these techniques via apps from the Internet.84,85
When adjunctive psychotropic medications are
necessary (eg, for severe symptoms or inability or
resistance to try behavioral therapies), the same guide-
lines are used as for non-IBD patients. There are several
reviews available on specific issues related to the use of
psychiatric medications in patients with IBD.32,86,87
Additional Psychosocial Factors
Several other psychosocial factors that can affect the
quality of life of IBD patients are worth mentioning
because they are the focus of increasing research inter-
est. These include race (ethnicity) and sexual identity.88
Although there has been a white predominance in IBD
in the past, recent studies demonstrate an increasing
incidence of IBD in minorities.89 There appears to be dif-
ferences between whites and non-whites (all minorities)
in disease characteristics such as perianal disease, fistulas,
and disease location and differences in treatment use such
as use of steroids, parenteral nutrition, and biologic
drugs.90–100 Although genetics may play a role, cultural
differences in understanding and accepting treatment
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Clinical Gastroenterology and Hepatology Vol. 15, No. 7
approaches may also be important.97–99 Providers may
have a subtle bias against initiating treatment, medical or
surgical, in minority subgroups of patients.99,100
Psychosocial factors related to religion and culture may
also influence treatment decisions among various de-
mographic groups. One study showed religious connec-
tions were stronger for people with IBD versus the general
population, providing an important strength area to
probe.99 Once thought to predominantly affect people from
Ashkenazi or Eastern European Jewish descent,100–103 the
realization that IBD crosses racial and cultural boundaries
means that health care professionals need to educate
themselves about how religious and cultural differences
affect medical care and patient decisions.104–106
Finally, another often neglected area is a focus on
gender identity and sexual orientation. Despite growing
evidence of psychosocial and medical risks as well as
marked disparities associated with lesbian, gay, bisexual,
or transgender persons compared with heterosexual in-
dividuals,107,108 it is a neglected area of research in IBD.
A single report from King’s College emphasized the need
for careful questioning about sexual activity and psy-
chosocial needs of lesbian, gay, bisexual, or transgender
IBD patients.109
Health System Barriers
There are multiple health system barriers that need
to be addressed for a successful integration of behav-
ioral/psychosocial care into IBD clinical settings. These
include lack of resources (eg, access to appropriate
providers), financial constraints of patients and pro-
viders, and lack of appropriate reimbursement models.
These issues are especially pertinent as health systems
begin to assume financial risk for all aspects of care for
groups of patients.110,111
Financial, resource, and access to care (especially
emergency and urgent care) issues related to mental
health screening were addressed above. However, there
are broader financial barriers related to IBD care that
need to be understood and addressed so that psycho-
social domains can be included. One such barrier re-
mains patient-related financial constraints. About 26% of
African Americans and 24% of Hispanics in the United
States were living in poverty in 2015 compared with
10% of whites.110 Combining financial insecurity with
racial and ethnic disparities was estimated to cost the
United States about $60 billion in excess medical costs in
2009, a sum that will increase substantially if not miti-
gated by effective interventions.70
After examining multiple psychosocial, racial, ethnic,
financial, and gender identity issues affecting the care of
IBD patients, the task force searched for ongoing pro-
grams from a variety of practice settings that were
designed to manage these factors. We identified exam-
ples from both community practices and practices (both
academic and non-academic) associated with large
July 2017
health systems that have successfully implemented some
parts of integrated IBD care.
Examples of Integrated Inflammatory
Bowel Disease Care Within
Health Systems
Large health systems have capacity that independent
practices lack in creating integrated care models, remote
monitoring, virtual consultation, and telecommunication.
Currently, there are several examples of integrated IBD
care within large health systems (this discussion is not
all inclusive).9,10,16,19,23,28
There are several structural methods to integrate
psychosocial care into a practice. One is coordinated
care, which refers to routine screening for comorbid
mental health disorders by using basic but evidence-
based behavioral health screening tools (Table 1). Pa-
tients who are screen-positive would be referred as
needed to pre-identified community resources or mental
health professionals. Care coordination would include
routine and basic exchanges of information. With this
model, a care manager/nurse coordinator could ensure
patients’ access to mental health providers and follow-up
care outside the gastroenterology practice.9
Integrated care describes a practice where a treatment
plan including both physical and behavioral health is an
integral part of the initial evaluation and entire care expe-
rience.10 Treatment plans are linked to team-based care,
regardless of whether all services are provided in the same
location.10,16 Financial feasibility remains the greatest
issue determining levels of integration in different practice
settings. Even in primary care, most integrated care models
are grant-funded or developed only when systems change
to risk-based or capitated payment models.
An example of an integrated care model is the Wake
Forest Baptist Health system that collaborates with
CareNet Counseling, the behavioral health subsidiary of
Wake Forest Baptist Health.112 CareNet recruits, hires,
and trains mental health professionals, who then are
located into various ambulatory care settings and bill
under their own professional licenses. Such integration
improves referrals to behavioral health services, recog-
nizes diagnosable behavioral issues, and identifies med-
ical non-adherence earlier than traditional services.
The IBD Center at the University of Pittsburgh Med-
ical Center has 2 integrated models of psychosocial care
for IBD patients. The first is a model where patients with
psychosocial needs identified by the gastroenterologist
are referred to a behavioral clinic associated with the
Gastroenterology Division, which is called the Visceral
Inflammation and Pain Center.16,36 The Visceral Inflam-
mation and Pain Center is staffed with psychologists and
psychiatrists who bill for services by using medical and
mental health billing codes. Initial results evaluating the
Visceral Inflammation and Pain model of care have
shown positive effects on health outcomes and reduced
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Integrating Psychosocial Care Into Your IBD Practice 991
medical utilization.16,36 A second model is a collaborative
care model, where behavioral health providers are co-
located in the gastroenterology clinic, and structured
care plans are co-developed by the medical and behav-
ioral team in an integrated way called Total Care IBD, is a
fully integrated subspecialty medical home, and is asso-
ciated with the University of Pittsburgh Medical Center
Health Plan to study volume to value transition in care
management with an emerging financial risk sharing
reimbursement model.16 In this model, the gastroenter-
ologist, psychiatrist, social worker, nurse practitioner,
nurse, and dietitian form a team to manage high-cost IBD
patients. In addition, this program also takes advantage
of trained peer specialists to develop an empathic
connection with patients, provide education, and serve as
a communication liaison to the outpatient Total Care
team.113 The Total Care IBD model was shown to have
greater impact on patient adherence to behavioral care
than the Visceral Inflammation and Pain Center model
when patients screened positive for suicidal thoughts.10
The Total Care Program has shown improvement in
quality of life and reduction in medical utilization over
time in preliminary analyses.10
Three other examples of fully integrated models of
care in academic centers are offered at the IBD Centers at
Brigham and Women’s Hospital, Vanderbilt University
Medical Center, and Mount Sinai Medical Center. They
use similar models of care where a social worker, psy-
chologist, psychiatrist, and nurse educator provide
behavioral health support. Stress management/mind-
body programs are offered in addition to nutritional
counseling and self-management tools via mobile appli-
cations and a dedicated website.114 The model at Brig-
ham and Women’s Hospital was established with pilot
funding through a pharmaceutical grant, whereas the one
at Vanderbilt University Medical Center is self-funded
and includes an imbedded pharmacist. Mount Sinai
Medical Center is funded by philanthropy and more
recently via the hospital through New York State
Medicaid/Medicare funds (personal communication,
November 12, 2016, Laurie Keefer). An integrated
behavioral program for all of gastroenterology, with 20%
having IBD, was piloted at Northwestern University.83
Behavioral treatment consisted largely of cognitive
behavioral therapy (44%) and hypnosis (48%). Re-
ductions in gastrointestinal-related medical procedures
after 6 months were robust for patients with functional
gastrointestinal disorders. Such integrated programs also
show promise in adults with irritable bowel syn-
drome.115 A model program for behavioral integration
into pediatric gastroenterology, which included patients
with IBD, has also been published.116
A standardized model to implement an IBD practice
with psychosocial care has been developed by the IBD
Support Foundation and published recently.9 The IBD
Support Foundation model now has been implemented in
several academic medical centers and community practices
including University of California San Diego, Mayo Clinic,
992 Szigethy et al
Vanderbilt University Medical Center, University of
Southern California, Texas Digestive Disease Consultants,
and Gastro Health in Florida. These models use care algo-
rithms outlined in IBD Support Foundation’s Psychosocial
Assessment and Intervention Protocols and are available in
published form.9 Each of these sites has piloted psycho-
social care integration with funding from pharmaceutical
grants, and randomized controlled trials are being con-
ducted to determine its impact on health outcomes.
Outside of North America, models of integrated
behavioral care in gastroenterology and specifically for
IBD are published. In Europe, a value-based health care
model focused on coordinated care, task differentiation of
providers, and continuous home monitoring (using mo-
bile health technologies) showed significantly fewer up-
per endoscopies, surgeries, hospitalizations, and
emergency room visits compared with matched con-
trols.13,117,118 IBD-related costs were 16% ($771 per pa-
tient) less than expected during the 1-year study period.13
Large health systems also have begun to develop
telecommunications and telehealth programs as
described in a recent review by Cross and Kane119 to take
care of the “whole patient”. Multiple examples of effective
use of telemedicine now are available from practices
caring for patients with several chronic gastrointestinal
disorders.76,120–128 A remote patient monitoring process
using smartphone apps that integrate directly into a large
health system electronic medical record (EMR) (Epic) has
been developed at Mount Sinai Hospital in New York
City.76 Patient-reported outcomes and decision support
tools interact with the EMR so providers can view infor-
mation in real time during the usual course of patient
visits without changing to another platform. Thus, patient-
reported symptoms become part of the foundational
clinical record. This program has received a federal grant
and is being evaluated as part of a multicenter, random-
ized controlled trial.
Finally, another program designed to engage patients
and build a learning community among participating
practices has been introduced by the Crohn’s and Colitis
Foundation of America called IBD Qorus. The program is
designed to facilitate shared decision-making, leading to
more consistent and evidence-based care. Working with
the Institute for Healthcare Improvement, a Break-
through Series Collaborative has been developed to focus
on improved access for urgent care for patients (per-
sonal communication, February 8, 2017, Alandra
Weaver, MPH, Director IBD Qorus at Crohn’s and Colitis
Foundation of America).
Examples of Integrated Inflammatory
Bowel Disease Care From
Community Practices
Independent community practices are limited in their
ability to provide psychosocial support, integrated IBD
care, and non-reimbursable services (such as after-hours
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Clinical Gastroenterology and Hepatology Vol. 15, No. 7
patient care). However, some have excelled at efficiency
and patient-focused services, particularly in 4 areas: (1)
facilitated care access for IBD patients, (2) use of EMR
population analysis and alerts, (3) remote monitoring of
patients outside the practice environment, and (4)
financial support services. The task force identified a few
specific examples, prioritizing in the order of research
evidence, but we realize there are multiple examples of
innovative care among community practices without
published data that did not come to our attention.
Facilitated Access
One practice has developed facilitated IBD patient
access and education (personal communication, June 17,
2016, James Leavitt, MD). Every IBD patient is given a
special swipe card containing registration and clinical
information, allowing for fast track registration at each
visit (reducing duplicate data entry). The practice has a
dedicated IBD phone line during office hours that con-
nects the patient to an IBD specialist immediately. Acute
problems and walk-in patients are seen in the clinic on
the same day.
Use of Electronic Medical Record for
Population Health
Use of EMRs was encouraged by Medicare in 2009
when the Health Information Technology for Economic
and Clinical Health Act was passed by Congress. Many
practices use EMR’s alerts to monitor lab results or
schedule reminders and perform population level anal-
ysis of health outcomes. One practice we reviewed
developed automated reminders to monitor lab results in
patients on immunomodulator therapy (personal
communication, August 23, 2016, Joshua Colton, MD). In
addition, by using International Classification of Disease,
Ninth version codes for IBD, all unique patients within
the practice were identified and screened for anemia,
needed vaccinations, and other gaps in care, prompting
ancillary staff to reach out to patients proactively.
Real-time decision support tools have been developed
in the EMR such as standard order sets for patients
beginning biologic therapies. Using coding and billing
information to identify patients with specific disorders or
diseases and then matching resources or medical in-
terventions at a population level now is common in both
community and academic practices.76,120–128
Remote Monitoring
Finally, innovative tools now exist that facilitate
remote monitoring of patients outside the health care
environment. The impact of remote monitoring on health
outcomes was emphasized recently.119 Medical care
traditionally is reactive and based on patients seeking
care when ill. Patients with chronic diseases such as IBD
July 2017
often become accustomed to the chronicity of symptoms
and often present late during an exacerbation. During a
review of administrative records from 21,000 Crohn’s
disease patients in 2011, researchers found that less than
30% had a billable physician encounter in the 30 days
before a hospitalization.125–127
On the basis of these preliminary findings, this same
group developed a remote, smart-phone based moni-
toring system to determine whether facilitated patient
communication might impact resource use. The program
is a community-based registry and disease management
process developed as a joint venture between a com-
munity practice and a large payer. Patients are screened
at enrollment for depression and surveyed electronically
monthly with a smartphone app that asks 5 questions
from the Crohn’s Disease Activity Index, one of which is a
health-related quality of life question.125–127
Patient responses are organized by using a pro-
prietary cloud-based program (created by SonarMD, LLC,
Chicago, IL) that yields a disease score that is combined
with clinical data from the practice EMR, sent to a cloud-
based data server, and integrated with embedded clinical
decision support tools. These fields are then combined
with claims data to provide comprehensive, real-time
information to physicians and patients about trends in
current symptoms and health status. The clinical deci-
sion support tools were based on the AGA’s Crohn’s
Disease Care Pathway.128
In another remote monitoring trial involving a con-
sortium of academic and non-academic centers, Health-
PROMISE, an app that evaluates patient gastrointestinal
symptoms and quality of life, 320 patients enrolled over
2 sites showed significant engagement, satisfaction, and
the following specific results:129
 Anxiety and fatigue were noted to be major drivers
of poor quality of life scores.
 Significant improvement in patient-reported quality
of life among HealthPROMISE patients (mean,
30.3–25.2; P < .01) within 5 months (lower is better).
 Increase in percentage of eligible quality indicators
(quality metrics) met in HealthPROMISE arm (28%)
versus control app (9%) (P < .01).
Financial Support Services
A large single specialty gastrointestinal (GI) practice
in Minnesota developed (and internally funded) a group
of 3 patient financial coordinators (PFCs) to help pa-
tients access expensive biological therapies for IBD. This
model became financially self-sustaining because the
practice avoided writing off bad debt accumulated from
unpaid infusion charges (personal communication,
August 23, 2016, Joshua Colon, MD). Before development
of this program, some patients accumulated unpaid
balances greater than $25,000. PFCs effectively con-
nected many patients with existing assistance programs
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Integrating Psychosocial Care Into Your IBD Practice 993
(pharmaceutical companies, Medicaid, and foundations)
that patients often were not using. Patients simply
needed assistance navigating these programs. PFCs are
involved from the first patient visit where a biologic
therapy is considered. Through a notification system
built into the practice EMR, the PFC team is alerted to
contact appropriate patients, and they begin to deter-
mine benefits available, manage pre-authorizations, and
coordinate assistance programs. A GI practice in south
Florida has developed a similar process and coordinates
therapies with specialty pharmacies that have been
vetted for lowest out-of-pocket patient costs (personal
communication, June 17, 2016, Dr James Leavitt).
Alternative Payment Models
Supporting Integrated Care
The single largest barrier to implementing psycho-
social care into routine IBD practice has been a lack of
payment support within the current fee-for-service
reimbursement system that is dominant in the United
States. The Medicare Access and CHIP Reauthorization
Act passed in 2015 mandated that the Centers for
Medicare and Medicaid develop provider payment
models that link reimbursement with quality and cost,
termed value-based reimbursement, and include innova-
tive “alternative payment models.”130
A type of alternative payment mode used by a large
New Jersey–based payer is based on a total payment for
an Episode of Care (EOC) of IBD including psychosocial
care. Unlike fee-for-service where payment is made for
all specific services delivered without regard to health
outcomes or patient experience, this EOC model is based
on all care delivered to a particular patient that is related
to IBD across the full continuum of care. Payment is
linked directly to a combination of quality outcomes,
patient experience, and cost. Payments are based on
retrospective adjudication, where providers are paid fee-
for-service and episodes that are completed during the
measurement period are retrospectively evaluated
against pre–agreed on metrics. If quality and patient
experience metrics are met/exceeded and the costs come
in under budget, the provider shares in the savings.
The goal of EOCs is to stratify patients so that like
patients and like outcomes can be compared for pur-
poses of studying variation in the utilization of services
delivered and the cost of those services, so that both care
and cost of care may become more standard and opti-
mized. EOC models create accountability for care of the
whole patient, including psychosocial components. As
EOC models evolve, payers and employers will demand a
comprehensive EOC for chronic IBD, including both
medical and behavioral health-related costs to achieve
health and life outcomes important to patients. Such
programs will have the following characteristics:
1. Incorporate no/low risk to providers to allow for
collaboration
994 Szigethy et al
2. Have upside potential for patient and provider
3. Be constructed to allow administration by both
providers and payers
4. Be established for a long enough period to allow
for effective care transformation
5. Avoid further aggravation of historic strained
relations between payers and providers
6. Create a platform to migrate to accountability for
care across the full continuum.
Initial EOC models are usually “upside only” where
providers receive an incentive for exceeding targets
(financial or quality) but are not at risk for failure. This
approach affords a unique opportunity for providers and
payers to truly collaborate. It takes time for trans-
formations to take place for both providers and payers,
so it is advisable to begin with a program that provides
enough time (1–3 years) to allow for collaborative
learning. The program then can be migrated to a two-
side model or a prospective model in which providers
accept full or partial financial risk.
Conclusion
Clearly, reforms in health care delivery and reim-
bursement are generating innovative care models as risk
begins to be shared among patients, providers, pur-
chasers of health care, and health systems in ways not
previously seen. Mounting evidence about social and
psychological determinants of health, health disparities,
and cultural barriers to health points us in directions of a
“Whole-Person” care paradigm. A recent systematic re-
view and meta-analysis of 1824 studies with 14 ran-
domized controlled trials comparing psychological
therapy with a control intervention with usual medical
therapy showed short-term benefit for such therapy but
less effect on long-term disease activity.131 This conclu-
sion supports the conclusion of this white paper that
psychosocial interventions cannot substitute for effective
medical therapies, but evidence presented here suggests
a combined, integrated approach will be of substantial
value to IBD patients.
This white paper has outlined reasons for an inte-
grative care model, specific tools to help construct the
model, and working examples of patient-focused care.
Innovative practices can use these tools and concepts to
meet the challenges of emerging alternative payment
models as we evolve our care delivery processes toward
higher health value for our patients.
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Reprint requests
Address requests for reprints to: John I. Allen, MD, MBA, Division of Gastro-
enterology and Hepatology, Department of Medicine, University of Michigan
School of Medicine, 3912 Taubman Health Center, 1500 East Medical Center
Drive, Ann Arbor, Michigan 48109. e-mail: allenji@med.umich.edu; fax: (612)
863-3456.
Conflicts of interest
The authors disclose no conflicts.