Burdened by Chronic Psoriasis A Primer On Costs, Quality and Access in The United States

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Burdened by Chronic Psoriasis: A Primer on Cost, Quality, and Access in the

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Burdened by
Chronic Psoriasis
A Primer on Costs, Quality and Access
In the United States
Safia Fatima Mohiuddin

Researcher & Scientific Writer (Corresponding Author)
BCA (Osmania University), MSc Bioinformatics (IASE University), Graduate Certificate

Healthcare Management (Clarkson University Graduate School USA)
Hyderabad, Telangana 500024, India; Mobile: 8019202091

Email: safia_fatima@yahoo.com; safia.fatima@gmail.com
Preface and Summary
This book strives to give insight into the cost, quality and access aspects of
the non-infectious, multifactorial chronic skin ailment, Psoriasis and its associated
co-morbidity, Psoriatic Arthritis.
The book explores the medical, environmental and social aspects of the
disease, exploring treatment options and relative efficacy. The overly taxing nature
of the illness trajectory (for the patient) is explored throughout the book. The
research work is based on National cost estimates.
Quality of life being an important aspect is explored and various measures of

Quality used in the United States and in other countries are included, with an
assumption that they might find applicability to global population in future.
The recent initiatives undertaken under the National Psoriasis Foundation to

improve access to the uninsured and underinsured Psoriasis population also have
been summarized. These initiatives have enormous potential and would definitely
gain momentum in the future.
Psoriasis being a benign illness, has not received much attention in the past.
The insight gained through this research work would provide enough evidence to
further the drive towards better cost-control, access mechanisms and quality
measurement related to psoriasis.
Contents
Chapter 1: Introduction 6
Chapter 2: Psoriasis Overview 8
Chapter 3: Epidemiology of Psoriasis 11
Chapter 4: Illness Trajectory Portrayal 19
Chapter 5: Medical Aspects 23
Chapter 6: Aspects of Quality 28
Chapter 7: Aspects of Access 35
Chapter 8: Resource Utilization 38
Chapter 9: Economic Aspects 44
Chapter 10: Conclusion 47
Burdened by Chronic Psoriasis: A Primer on Costs, Quality and Access in the United States
Chapter 1: Introduction
1. Motivation and Purpose
Psoriasis, a chronic inflammatory skin disorder is characterized by an
inflammatory cascade, triggered through several environmental, socio-economic,
psychological and pharmacological risk factors and is accompanied by numerous
co-morbidities. Unfortunately, the etiology of the disease is unknown, and as a result
a number of experimental treatment guidelines exist, with varying degrees of
efficacy.
The amount of research that has been carried out into this domain has been
limited, and the disease has not received much attention primarily due to its
non-malignant nature and slow course of development. However, recent studies
have indicated its substantial impacts on the quality of life and economic aspects, to
name a few.
The purpose of this book is to highlight the medical, economic, social and
psychological impacts at the individual, state and national levels in addition to
summarizing disease physiology and epidemiology.
2. Hypothetical Case Presentation

In order to aid the reader in understanding disease impact at various stages
during the course of illness, a hypothetical case has been presented in order to
represent the illness trajectory1. The background information is indicated below and
the case is evolved throughout the book.
Stephanie was born to Luke and Lily in the Summer of 1985 and was a
perfectly normal child. Luke had a history of Rheumatic Arthritis and Depression and
Lily was Hypertensive. Stephanie covered all her milestones successfully and never
required medical attention for any serious trouble.
1
The case has been developed through personal observation of real psoriasis cases
Page 4 of 57
When Stephanie was 11 years old, she developed silvery flakes on her elbows
and complained of mild itching. Dr. Owen, her pediatrician prescribed an anti-fungal
ointment until her two-week follow-up visit.
Page 5 of 57
Chapter 2: Psoriasis Overview

When Dr.Owen did not find any significant improvement in Stephanie’s skin
condition, he referred her to a dermatologist, Dr. Hyde, who scraped a part of the
silvery skin around her elbows for a biopsy.
Lily was perplexed but answered all questions about family history, allergies
and medical records for Stephanie to the best of her ability.
Dr. Hyde later confirmed that Stephanie had developed Juvenile Psoriasis.
1. Etiology and Pathophysiology

The cause of psoriasis is still unknown. However several factors have been
established as determinants of the disease. The actual disease formation is a result
of a strong genetic component, triggering an autoimmune response due to one or
several environmental factors (often referred to as triggers).
Dr. Lebwohl at the American Academy of Dermatologists defines the

pathophysiology of Psoriasis as “an inflammatory disorder of the skin in which
activation of T lymphocytes results in release of cytokines that leads to proliferation
of keratinocytes”. Further, he states that psoriatic skin regeneration takes 2-4 days,
as opposed to the normal 28 day skin regeneration cycle.2
2. Signs and Symptoms

The American Academy of Family Physicians describes the signs and
symptoms of a typical Psoriasis patient3.
▪ “Pink or red, raised patches of scaly skin”
▪ “Dry, cracked or flaky skin (it may also bleed at times)”
2
"Psoriasis." American Academy of Dermatology. Web. 13 Nov. 2010
<http://www.aad.org/education/students/psoriasis.htm>.
3
"Psoriasis." Health Information for the Whole Family -- Familydoctor.org. American Academy of Family
Physicians. Web. 13 Nov. 2010.
<http://familydoctor.org/online/famdocen/home/common/skin/disorders/199.printerview.html>.
Page 6 of 57
▪ “Skin that burns, is itchy or sore”
▪ “Thick, pitted fingernails”
▪ “Pus-filled blisters on the red patches of skin (in more severe cases)”
3. Clinical Subtypes
Psoriasis clinical subtypes include4:
▪ Plaque: Affecting almost 80% of the psoriasis population, plaque

psoriasis is featured by “raised, inflamed, red lesions covered by a
silvery white scale” on the elbows, knees, scalp and lower back.
▪ Guttate: Children and teenagers are vulnerable to guttate psoriasis,

which appears as “small, red, individual spots” on the trunk and limbs.
Streptococcal infections and certain medications are known triggers for
guttate psoriasis.
▪ Inverse: Inverse psoriasis is characterized by “bright-red lesions that

are smooth and shiny” usually in armpits, groin, under the breasts, and
in other skin folds around the genitals and the buttocks.
▪ Pustular: “White blisters of noninfectious pus surrounded by red skin”

in pustular psoriasis may be triggered due to “internal medications,
irritating topical agents, overexposure to UV light, pregnancy, systemic
steroids, infections, stress or sudden withdrawal of systemic or potent
topical steroids”
▪ Erythrodermic: The erythrodermic form of psoriasis is particularly

inflammatory and affects most of the body surface. It is characterized
by “periodic, widespread, fiery redness of the skin and the shedding of
scales in sheets, rather than smaller flakes”. Hospitalization may be
necessary in most cases due to “severe itching and pain, heart rate
increase, and fluctuating body temperature”
4
Classification of subtypes by National Psoriasis Foundation (www.psoriasis.org).
Page 7 of 57
Plaque Guttate Inverse
Putular Erythrodermic
Figure 1: Psoriasis Clinical Forms5
5
Courtesy: National Psoriasis Foundation: www.psoriasis.org
Page 8 of 57
Chapter 3: Epidemiology of Psoriasis

Epidemiology is defined as the study of the distribution and determinants of
disease in human populations with the goal of finding the causes of both health and
disease.6
1. Disease Distribution
The National Psoriasis Foundation provides interesting prevalence statistics
on Psoriasis, summarized below7:
▪ Psoriasis, being the most prevalent autoimmune disease in the US,

accounts for 7.5 million Americans (2.2% of total population).
▪ 125 million people worldwide (2-3% of total population) suffer from

Psoriasis
▪ 10-30% people afflicted with Psoriasis develop Psoriatic Arthritis
▪ There is higher disease prevalence among Caucasians (2.5%) when

compared to African Americans (1.3%)
▪ Two ages of onset have been noticed at 15-30 and after 40 years of
age
6
Strosberg, Prof. Martin. "Epidemiology." Joule - Online Portal. Union Graduate College, 1 July 2010. Web. 13
Nov. 2010. <http://online.uniongraduatecollege.edu/mod/resource/view.php?id=639>.
7
"About Psoriasis- Statistics." National Psoriasis Foundation. Web. 13 Nov. 2010. <http://www.psoriasis.org>.
Page 9 of 57
Figure 2: Psoriasis Prevalence
A recent epidemiological study in Germany indicated that prevalence of

juvenile psoriasis rose more then 10 times between patients aged 1 year and
18 years of age and the overall rate of co-morbidities in psoriatic patients
younger than 20 years was twofold. The study suggested early detection and
treatment and advised an interdisciplinary approach between pediatricians
and rheumatologists.8
2. Disease Determinants
Lily was quite upset after a long conversation with Dr. Hyde, about the chronic
nature of the disease and its uncertainty in progression, despite medication. Dr.
Hyde however reinforced that a number of factors were responsible for the course of
the illness and disease severity. He stressed on proper disease management whose
pivotal factor was an understanding of the disease determinants and interactions.
8
Augustin, M., Glaeske, G., Radtke, M., Christophers, E., Reich, K. and Schäfer, I. (2010), Epidemiology and
comorbidity of psoriasis in children. British Journal of Dermatology, 162: 633–636.
doi: 10.1111/j.1365-2133.2009.09593.x
Page 10 of 57
Henrik K. Blum describes the “force-field and well-being paradigms of health”9

using a model of the “Health Services Environment.” The model describes the main
factors affecting health, which are consequences of divergent yet predictable forces
that are constantly changing. According to this model, the major determinants of
health (which resides in the central core) include environment, heredity, medical care
services and life styles. The most powerful force is the environment, followed by
heredity and lifestyle and the lesser force field is the medical care services. An outer
force field is also characterized by the population health which involves adequate
resources in proper ecological balance to support lifestyle. Further, human
satisfactions are dependent on quality of medical care and lifestyles. The goal is to
achieve equilibrium in population health by balancing all needs in the outer field.
This is crucial for a balanced approach which emphasizes “health determinants at an
individual level, as well as broad policy interventions at an aggregate level”.10
9
Blum, Henrik K. Expanding health care horizons: From a general systems concept of health to a national health
policy, 2d ed., 37. Oakland, CA: Third Party
10
Shi, Leiyu, Douglas A. Singh, and Leiyu Shi. "2: Foundations of US Health Care Delivery." Essentials of the US
Health Care System. 2nd ed. Sudbury, MA: Jones and Bartlett, 2009. 31. Print. “Determinants of Health”
Page 11 of 57
Figure 3: Blum's Characterization of Health Determinants
The Health Determinants with the perspective of Psoriasis as a chronic

disease are summarized below:
Inner Well-Being Paradigm

Health11 is “a complete state of physical, mental, and social well-being, and
not merely the absence of disease or infirmity”12.
Lily was frustrated, even after most of her concerns were addressed by Dr.
Hyde. She could not understand why her daughter, who did not feel any pain, fever
or apparent disease symptoms, was labeled as chronically ill. Dr. Hyde clarified that
11
WHO definition of “Health”
12
Health Care System. 2nd ed. Sudbury, MA: Jones and Bartlett, 2009. 29. Print. “What is Health?”
Page 12 of 57
although Stephany was not feeling “ill”, an immunological cascade had already
begun in her system and thus her “disease” had been determined.
It is important to differentiate between disease and illness. While the former

is linked to an individual’s perceptions, the latter is related to a medical professional’s
evaluation.13
Further, diseases are classified into acute, sub acute and chronic. Acute
illnesses are episodic with treatment usually provided in the hospital and a sub acute
condition is between acute and chronic with certain acute features. On the other
hand, a chronic condition is less severe, but of a long and continuous duration, and
the patient may not fully recover.
Measurable Facets of Health

Shi and Singh present a good aggregation of health indicators14, which are
mapped to Psoriasis facets:
1. Life expectancy: Severe psoriasis reduces life expectancy by 3.5 years

for men and 4.4 years for women.15
A 2008 Canadian study described in Medical News Today16 identified that the
overall life expectancy was decreased by ten years. Further, patients who
developed psoriasis before the age of 25 had their life expectancy decreased
by 25-30 years. This was mainly attributed to the high rate of co-morbidities
associated with the disease.
13
Health Care System. 2nd ed. Sudbury, MA: Jones and Bartlett, 2009. 30. Print “Illness and Disease”
14
Health Care System. 2nd ed. Sudbury, MA: Jones and Bartlett, 2009. 29. Print. “What is Health?”
15
Gelfand, JM, Troxel, AB, Lewis, JD, Kurd, SK, Shin, DB, Wang, X, Margolis, DJ, and Strom, BL. The risk of
mortality in patients with psoriasis: Results from a population-based study. Archives of Dermatology.
2007;143:1493-1498.
16
Stein, Jill. "Psoriasis Patients Need To Be Checked For Multiple Concurrent Diseases." Medical News Today:
Health News. 11 Mar. 2008. Web. 17 Nov. 2010. <http://www.medicalnewstoday.com/articles/100266.php>.
Page 13 of 57
2. Self-reported Health Status: More than 80 percent of patients report

their disease to be a moderate or large problem in their everyday life
(symptoms include pain, itching, burning and stinging) and almost
10% of the patients surveyed wished they were dead.17
3. Morbidity (disease): Several physical co-morbidities exist for Psoriasis

including psoriatic arthritis, cardiovascular disease, metabolic syndrome
(ischemic heart disease, hypertension, liver disease, diabetes and
obesity) and Chron’s disease. 18
Psychological co-morbidities include depression, anxiety, suicide

ideation and Alexithymia19.
4. Mental well-being: Psoriasis is associated with strong feelings of anger

and frustration, self-consciousness, helplessness and embarrassment20
5. Social functioning: The National Psoriasis Foundation ascertained that

(among the people surveyed) 25% of people with psoriasis and 50%
with psoriatic arthritis reported that their disease negatively affected
their jobs. Several respondents also indicated that the disease
interferes with their sexual activities. More than 40% indicated that
they experienced social discrimination and humiliation.21
An interesting Boston based study22 attempted to identify key stages

when patients seemed vulnerable to social disconnection. Seilder and
17
Information compiled from National Psoriasis Foundation – Psoriasis and Mental Issue Brief :
http://www.psoriasis.org/NetCommunity/Document.Doc?id=794
18
Kimball, A., Gieler, U., Linder, D., Sampogna, F., Warren, R. and Augustin, M. (2010), Psoriasis: is the
impairment to a patient’s life cumulative?. Journal of the European Academy of Dermatology and Venereology,
24: 989–1004. doi: 10.1111/j.1468-3083.2010.03705.x
19
Alexithymia is a Cognitive disturbance that is characterized by the difficulty in describing one's own
emotions.
20
National Psoriasis Foundation – Psoriasis and Mental Issue Brief
21
National Psoriasis Foundation – Psoriasis and Mental Issue Brief
22
Seidler, E. and Kimball, A. (2009), Socioeconomic disability in psoriasis. British Journal of Dermatology,
161: 1410–1412. doi: 10.1111/j.1365-2133.2009.09464.x
Page 14 of 57
Kimball measured social connectivity with respect to loss of social

network (religious affiliation), interpersonal connection (divorce) and
workplace disconnection (subscription to Medicaid due to its high
correlation). The age range was concluded to exist between late 20s
and early 30s.
6. Functional Limitations: Psoriasis interferes with several Instrumental

Activities of Daily Living (IADL) as patients experience symptoms
related to psychological and physical dysfunction.
7. Disability: Several ADLs (Activities of Daily Living) are also affected by

the debilitating nature of Psoriatic Arthritis and the severe joint pain,
discomfort and eventual deformity of joints associated with the disease
(in the absence of treatment or responsiveness of patient)
8. Spiritual well-being: The overall dysfunction in the fundamental body

mechanisms renders a Psoriatic patient incapable of realizing spiritual
well-being.
Outer Force Field

1. Heredity:
a. A first degree relative with psoriasis contributes to risk of

developing the disease. Multiple genetic polymorphisms have
been identified although gaps in information still exist.
2. Environment:
a. Winter and colder climates aggravate disease severity
b. Streptococcus infections might start a psoriasis immune system

cascade
c. Trauma to normal skin may produce psoriasis in the affected

area, a process termed as Koebner phenomenon
Page 15 of 57
d. Negative traumatic life experiences have been linked to psoriasis

beginning from childhood to early adulthood.23
e. Higher education and household income levels were associated

with increased willingness to pay for psoriasis cure, precisely
from $500 to $5000.24
f. Alcohol consumption, tobacco consumption and stress were

found to be four times higher in psoriasis affected patients.25
3. Medical Care Services:
a. Systemic corticosteroids, lithium, beta blockers, NSAIDs and

antimalarial drugs might trigger an autoimmune response
4. Life Styles:
a. Stress plays an important role especially during

recurrences/extensions as it affects over-expression of
pro-inflammatory hormones. Women with psoriasis vulgaris and
men with guttate psoriasis are considered more sensitive to
stress.26
Population Health
Dr. Hyde further explained to Lily that the National Psoriasis Foundation is
engaged in a number of initiatives to implement public policy for the benefit of
psoriasis patients in general. Further, he also stated the role of numerous public
23
SIMONIĆ, E., KAŠTELAN, M., PETERNEL, S., PERNAR, M., BRAJAC, I., RONČEVIĆ-GRŽETA, I. and KARDUM, I.
(2010), Childhood and adulthood traumatic experiences in patients with psoriasis. The Journal of Dermatology,
37: 793–800. doi: 10.1111/j.1346-8138.2010.00870.x
24
Delfino M Jr, Holt EW, Taylor CR, Wittenberg E, Qureshi AA. Willingness-to-pay stated preferences for 8
health-related quality-of-life domains in psoriasis: a pilot study. J Am Acad Dermatol. 2008 Sep;59(3):439-47.
Epub 2008 Jul 17.
25
(2010), Psychological/social impact of psoriasis. Journal of the European Academy of Dermatology and
Venereology, 24: 60–63. “P 138” doi: 10.1111/j.1468-3083.2010.03718_12.x
26
Manolache, L., Petrescu-Seceleanu, D. and Benea, V. (2010), Life events involvement in psoriasis
onset/recurrence. International Journal of Dermatology, 49: 636–641. doi: 10.1111/j.1365-4632.2009.04367.x
Page 16 of 57
awareness campaigns, which would go a long way in boosting self-confidence for the
psoriasis population, thereby promoting a healthy psyche
Asch et al. define Population Health27 as “the product of a wide range of

social, biological, and environmental forces, including education, income, social
status, genetic endowment, physical exposure, personal behavior, and social
context”
The National Psoriasis Foundation frequently organizes initiatives to alter

public policies that might adversely affect the psoriasis population.
Further, public awareness campaigns are organized each year, which promote
the mental and psychological well-being of the individual. This is in response to the
“social stigmatization” and “overt public rejection” experienced by psoriasis
patients.28 Noteworthy campaigns conducted recently include:
1. “Addressing Psoriasis Campaign”, launched during July-August 2009 by

Amgen and Wyeth, in association with TV host and fashion consultant
Tim Gunn to motivate plaque psoriasis patients to better manage their
disease with their dermatologist and help them regain confidence.
Dermatologist Susan C. Taylor, MD was actively involved in making the
campaign a success.29
2. The National Psoriasis Foundation conducts several awareness events

across US throughout the year, one of which is the “Walk with your
doc” program. The program is one of the 15 programs that aim at
27
Asch DA, Werner RM. Paying for performance in population health: lessons from health care settings. Prev
Chronic Dis 2010;7(5). http://www.cdc.gov/pcd/issues/2010/sep/10_0038.htm.
28
Ginsburg IH, Link BG. Osychological consequences of rejection and stigma feelings in psoriasis patients. Int J
dermatol. 1993; 32: 587-591
29
"Addressing Psoriasis Campaign Launched.(PSORIASIS NEWS)." Dermatology Nursing (Jannetti Publications,
Inc.) 21.4 (2009): 220-22. Print.
Page 17 of 57
creating awareness and raising funds for initiatives to improve access

to care through policy reform and affordability.30
30
Burfeind, Daniel B. "National Psoriasis Foundation Walk with your Doc program." Dermatology Nursing 21.3
(2009): 162+. General OneFile. Web. 29 Oct. 2010.
Page 18 of 57
Chapter 4: Illness Trajectory Portrayal

The concept of ‘Psoriatic disease’ was introduced in 2006 to include the skin,
joints and the gut as major areas of involvement after a better understanding of the
underlying causes.31 The basic definitions related to the illness trajectory and disease
progression are covered in the following section.
1. Definitions32
1. Illness Trajectory: As opposed to "illness," “Illness Trajectory” refers
not only to the physiological unfolding of a patient's disease, but to the
total organization of work done over that course, plus the impact of
those involved with that work and its organization. (Anselm Strauss.)
2. The trajectory of chronic illness (Corbin and Strauss):
▪ Home is the central site -- the major workplace -- where lifelong

illness is managed on a daily basis.
▪ The major concern of the ill and their family is not merely nor
primarily managing an illness, but maintaining the quality of life as
defined by them, despite illness.
▪ Lifelong illness requires lifelong work to: (1) control its course, (2)
managed its symptoms), (3) live the resulting disability. At home
work is done by the patient and family. In facilities, it is done by
staff with the help of the patient.
2. Psoriasis Illness Trajectory

When Lily questioned Dr. Hyde about his estimates on the spikes and dips in
the disease course, he was clueless, even after dealing with hundreds of cases. The
31
Scarpa R, Ayala F, Caporaso N, Olivieri I. Psoriasis, psoriatic arthritis, or psoriatic disease? [editorial]. J
Rheumatol 2006; 33:210-212
32
Strosberg, Prof. Martin. "Measuring the Economic Costs of Illness." Joule - Online Portal. Union Graduate
College, 2 July 2010. Web. 16 Nov. 2010.
<http://online.uniongraduatecollege.edu/mod/resource/view.php?id=686>.
Page 19 of 57
reason was that each case represented a different model due to multiple
environmental, genetic and immunologic factors and disease management was
extremely tough at times, while also getting easier than expected in certain cases.
He highlighted that close observation and timely medication, coupled with

patient’s compliance to medical advice would ensure successful control of psoriasis
flares, if they occurred. He also stated that Lily had a huge role to play in
maintaining Stephanie’s self-confidence and morale, as her family had a pivotal role
in helping her successfully cope with the disease.
The actual trajectory of Psoriasis is highly unpredictable and an immune

system cascade might start a new psoriasis flare due to numerous risk factors as
discussed earlier. Disease management is purely based on symptoms, and while one
person might have a relatively stable disease severity over his life course with
minimal medication, another might require frequent hospitalizations and might be at
high risk of mortality.
Figure 4: Highly dramatic psoriasis trajectory
Page 20 of 57
Figure 5: Relatively uneventful psoriasis trajectory
Psoriasis is known to have a profound impact on the Quality of Life of the

affected patient and its effects are known to build up according to disease
progression. A recent proposal33 to measure this impact has been the concept of
Cumulative Life Course Impairment (CLCI). According to Kimball et al., CLCI results
from “(A) Burden of stigmatization, and physical and psychological co-morbidities (B)
coping strategies and external factors”. The purpose of formulating such a strategy is
to better “understand overall impact of disease, identify vulnerable patients and
facilitate appropriate treatment decisions or earlier referrals.”
3. Functional Assessment
Functional Assessment is necessary in terms of measuring the ADLs (Activities
of daily living such as walking and talking) and IADLs (Instrumental Activities of
Daily Living such as handling money, telephone calls and the like) of a patient during
the course of their illness. This is because a restoration of these activities due to
33
Kimball, A., Gieler, U., Linder, D., Sampogna, F., Warren, R. and Augustin, M. (2010), Psoriasis: is the
impairment to a patient’s life cumulative?. Journal of the European Academy of Dermatology and Venereology,
24: 989–1004. doi: 10.1111/j.1468-3083.2010.03705.x
Page 21 of 57
impairment from disease progression is crucial to maintain the Quality of Life for the
patient.
The purposes of functional assessment34 include:
1. Measuring outcome: With growing demand for greater accountability,

there is a renewed interest in outcomes. Since mortality data is
insufficient as a measure of outcome, various measures of function
have been proposed.
2. Planning care: To say that an elderly person or disabled person has a

certain disease or set of symptoms may not be useful in planning care,
especially long term care. But to say that the person can achieve a
certain level of activities of daily living is much more useful.
3. Payment for care: The fewer things that a person can do for himself,
the more resources and services are needed (the higher the
reimbursement rate).
34
Strosberg, Prof. Martin. "Functional Assessment (ADL, IADL)" Joule - Online Portal. Union Graduate College, 3
July 2010. Web. 16 Nov. 2010. <http://online.uniongraduatecollege.edu/mod/resource/view.php?id=664>.
Page 22 of 57
Chapter 5: Medical Aspects

1. Disease Management
Dr. Hyde, after determining that Stephanie had developed Psoriasis Vulgaris
(Plaque Psoriasis), prescribed Hydrocortisone cream in combination with
Calcipotriene for local application.
The type of pharmacotherapy chosen depends on the clinical subtypes of

psoriasis expressed in the patient. The various treatments35 for Psoriasis are broadly
grouped into the following categories36.
Topical treatments
These treatments are effective for mild to moderate psoriasis and include:
▪ Topical corticosteroids such as Hydrocortisone creams which are

powerful anti-inflammatory drugs and slow cell turnover. They are
generally used to subside an outbreak and low-potency ointments are
used in sensitive areas.
▪ Vitamin D analogues such as Calcipotriene also slow skin cell growth. It

is generally used in combination with Corticosteroids or phototherapy.
▪ Anthralin, considered to normalize DNA activity in skin cells and remove

scale is recommended for brief application, as it stains skin and
clothing and sometimes combined with UV therapy.
▪ Topical retinoids such as Tazarotene are Vitamin A derivatives

normalize DNA activity.
▪ Calcineurin inhibitors such as Tacrolimus and Pimecrolimus disrupt the

activation of T cells and reduce inflammation and plaque buildup.
35
"Psoriasis: Treatments and Drugs - MayoClinic.com." Mayo Clinic Medical Information and Tools for Healthy
Living - MayoClinic.com. Web. 13 Nov. 2010.
<http://www.mayoclinic.com/health/psoriasis/DS00193/DSECTION=treatments-and-drugs>.
36
Treatment and Drug information by Mayo Clinic staff
Page 23 of 57
▪ Salicylic acid promotes sloughing of dead skin cells and reduces scaling
▪ Coal Tar reduces scaling, itching and inflammation
▪ Moisturizers reduce itching and scaling and can help combat the
dryness that results from other therapies
Phototherapy
▪ Natural sunlight causes the activated T-cells to die, slowing skin cell
turn over and reduces scaling and itching
▪ Controlled doses of UVB light from an artificial light source may

improve mild to moderate psoriasis symptoms (includes broadband and
narrow band therapy)
▪ Photo chemotherapy, or psoralen plus ultraviolet A (PUVA) involve

taking a light sensitizing medication (psoralen) before exposure to UVA
which penetrates deeper than UVB and penetrates deeper due to
increased skin responsiveness from Psoralen.
▪ Excimer laser involving controlled UVB for specific areas
▪ Combination light therapy supplementing UV light with other

treatments such as retinoids for improved effectiveness.
Systemic Medications
Systemic medications are targeted at severe cases of psoriasis and usually
superior in terms of effectiveness. However, the side effects induced by these
medications are significant.
▪ Retinoids are prescribed in cases where psoriasis is unresponsive to

other medication. When used during pregnancy, this may cause birth
defects
▪ Methotrexate (oral) suppresses skin cell production and psoriatic

arthritis. Side effects include severe liver damage and decreased
production of red and white blood cells and platelets.
Page 24 of 57
▪ Cyclosporine suppresses the immune system, and suppresses skin cell

production, but also increases susceptibility to kidney problems and
high blood pressure.
▪ Hydroxyurea is often combined with phototherapy, but it produces

anemia and decreases WBC and platelet count.
▪ Biologics such as alefacept (Amevive), etanercept (Enbrel), infliximab

(Remicade) and ustekinumab (Stelara) are given by intravenous
infusion, intramuscular injection or subcutaneous injection in highly
unresponsive cases. They block certain immune system cell
interactions, and may cause life-threatening infections.
☑ Chronic immune-suppressants such as Biologics are known to allow latent

Tuberculosis to develop into active Tuberculosis. An increase in disease severity
might make psoriasis resistible to topical medication and phototherapy, and in
such a case biologics are inevitable. However, this increases the risk of active TB
in psoriatic patients and screening mechanisms are prescribed by the National
Psoriasis Foundation before commencement of treatment through biologics37.
The figure below illustrates the efficacy of a Biologic (Infliximab) based on a

clinical trial.
37
Sean D. Doherty, MD, Abby Van Voorhees, MD, Mark G. Lebwohl, MD, Neil J. Korman, MD, PhD, Melodie S.
Young, MSN, RN, Sylvia Hsu, MD. National Psoriasis Foundation consensus statement on screening for latent
tuberculosis infection in patients with psoriasis treated with systemic and biologic agents. Aug 2008. JAAD.
59(2) DOI: 10.1016/j.jaad.2008.03.023
Page 25 of 57
Figure 6: Performance of Infliximab (Biologic therapy) on Psoriatic Patients38
A representation of the treatment efficacy with respect to psoriasis severity is

depicted in the pictorial representation below:
38
Results from EXPRESS trail at REMICADE® (infliximab):
http://www.remicade.com/remicade/global/hcp/hcppso_prior.html
Page 26 of 57
Figure 7: Schematic of Psoriasis Treatment Ladder39
2. Evidence Based Medicine

By now, Lily had finally accepted the fact that her daughter would have to live
with the disease and the best thing that she could do for her daughter was to help
her cope using the best available treatment options.
One day while Stephanie was playing in the backyard, she had hurt her knee
and Lily knew that she would develop Psoriasis on the trauma site, as Dr. Hyde had
already explained the “Koebner phenomenon” to her. Lily wondered if specific
treatment guidelines existed at various stages in the illness course which would
enable doctors to select the best possible response to a particular turning point
during disease progression.
39
"File:Psoriasis Treatment Ladder.svg." Wikipedia, the Free Encyclopedia. Web. 13 Nov. 2010.
<http://en.wikipedia.org/wiki/File:Psoriasis_treatment_ladder.svg>.
Page 27 of 57
Evidence-based medicine (EBM) or evidence-based practice (EBP) aims to

apply the best available evidence gained from the scientific method to clinical
decision making.40
The Stony Brook University Evidence-Based review41 of “Efficacy of Coal Tar

Preparations in the treatment of Psoriasis” is worth mentioning in this context. The
study concluded, after a systematic review of literature, that topical coal tar was
found to be the most efficacious in the treatment of psoriasis.
The generation of Evidence-Based Guidelines (EBG) is the result of practice of

evidence-based medicine at the organizational or institutional level. This includes the
production of guidelines, policy, and regulations. This approach has also been called
evidence based healthcare.42
A 2009 study in France43 culminated on ten recommendations or Evidence

Based Guidelines (EBG) to assess psoriasis severity, Quality of Life (QoL) and
comorbidities, based on “systematic appraisal of available evidence”. A group
of 44 French dermatologists, in hospital and office based settings developed
these claims based on clinical experience and three rounds of discussion. The
recommendations were graded and the level of agreement between
dermatologists was recorded.
40
Timmermans S, Mauck A (2005). "The promises and pitfalls of evidence-based medicine". Health Aff
(Millwood) 24 (1): 18–28. doi:10.1377/hlthaff.24.1.18. PMID 15647212
41
Slutsky JB, Clark RA, Remedios AA, Klein PA. An evidence-based review of the efficacy of coal tar preparations
in the treatment of psoriasis and atopic dermatitis. J Drugs Dermatol. 2010 Oct;9(10):1258-64.
42
Gray, J. A. Muir (1997). Evidence-based health care. Edinburgh: Churchill Livingstone. ISBN 0-443-05721-4.
43
Paul, C., Gourraud, P.-A., Bronsard, V., Prey, S., Puzenat, E., Aractingi, S., Aubin, F., Bagot, M., Cribier, B., Joly,
P., Jullien, D., Le Maitre, M., Richard-Lallemand, M.-A. and Ortonne, J.-P. (2010), Evidence-based
recommendations to assess psoriasis severity: systematic literature review and expert opinion of a panel of
dermatologists. Journal of the European Academy of Dermatology and Venereology, 24: 2–9.
doi: 10.1111/j.1468-3083.2009.03561.x
Page 28 of 57
Chapter 6: Aspects of Quality

1. Quality of Life in Psoriasis
A study published in 200444 focused on the determinants of Quality of Life
(QoL) in Psoriasis patients from the US population and concluded that patients with
a higher Body Surface Area coverage had adverse impacts on their Quality of Life
and that females and young patients were more frequently affected. The study used
Psoriasis Disability Index (PDI) for assessment and associations were developed
based on age, duration of psoriasis, extent and number of physicians seen in the
past two years using Spearman’s correlation coefficients. Skin involvement and
physician second opinions were found to be moderately correlated with QoL whereas
age was directly correlated. It was interesting to note that duration of disease had
no correlation with QoL suggesting that patients did not “adapt to disease overtime”.
A final recommendation suggested the need for high-risk and high-cost treatments
to be reserved for patients with “extensive disease”
Measuring Severity of Illness

Case Mix and severity of illness describes measurement criteria on the basis
of severity, acuity, complexity, intensity and treatment difficulty45. Some of the
measures of disease severity in Psoriasis are:
1. PASI – Psoriasis Assessment Severity Index measures the severity of

the disease with regard to area covered by lesions with a score in the
range 0 (no disease) to 72 (maximal disease)46.
2. PGA- This is a comprehensive measure of severity and intensity of the

disease by physician observation. The physician usually makes static
44
Gelfand JM, Feldman SR, Stern RS, Thomas J, Rolstad T, Margolis DJ. Determinants of quality of life in patients
with psoriasis: a study from the US population. J Am Acad Dermatol. 2004 Nov;51(5):704-8.
45
Strosberg, Prof. Martin. "Case Mix and Severity of Illness Measures." Joule - Online Portal. Union Graduate
46
Langley RG, Ellis CN: Evaluating psoriasis with Psoriasis Area and Severity Index, Psoriasis Global Assessment,
and Lattice System Physician’s Global Assessment. J Am Acad Dermatol 2004;51:563-9
Page 29 of 57
assessments (at a certain point in time) as well as dynamic

assessments (total improvement or worsening of the condition from
the baseline)47.
2. Performance Assessment
Quality48 is defined as “the degree to which health services for individuals and
populations increase the likelihood of desired health outcomes and are consistent
with current professional knowledge”.
Dr. Mark Chassin, President of Joint Commission recognizes three critical

angles to examine healthcare quality: overuse, underuse and misuse.49
Further, the Donabedian structure-process-outcome quality measurement

model50 can be used to measure the various indicators of health quality as illustrated
by the following examples51:
Structure (resource inputs) Process (medical care) Outcome (final results)
▪ Facilities ▪ Technical ▪ Improvement in

▪ Staff qualifications aspects health status
▪ Staffing levels ▪ Diagnosis and ▪ Recovery
▪ Licensing treatment ▪ Mortality
▪ Accreditation ▪ Accurate drug ▪ Re-hospitalization
administration ▪ Patient satisfaction
▪ Compassion ▪ Iatrogenic illness
and dignity
47
Feldman SR, Krueger GG. Psoriasis assessment tools in clinical trials. Ann Rheum Dis 2005;64:ii65-ii68
doi:10.1136/ard.2004.031237
48
Definition of “Quality” by Institute of Medicine (1994)
49
Related podcast on “Overuse, Underuse, and Misuse of Medical Care” available at
http://www.reachmd.com/xmsegment.aspx?sid=2752
50
Donabedian A. Explorations in quality assessment and monitoring: the definition of quality and approaches
to its assessment. Ann Arbor , MI: Health Administration Press; 1980.
51
Strosberg, Prof. Martin. "Structure, Process, Outcome measures." Joule - Online Portal. Union Graduate
College, 3 July 2010. Web. 16 Nov. 2010. <
http://online.uniongraduatecollege.edu/mod/resource/view.php?id=757>.
Page 30 of 57
A popular perspective backed by the ‘National Quality Measures

Clearinghouse’ classifies measures according to seven domains and categorizes them
as follows52:
Category Domains
Quality of care provided by health care Measures of access, process,

professionals and organizations outcome, and patient experience
Capacity of health care professionals and Measures of structure

organizations to provide high quality of care
Indirect measures Measures that are used to monitor

trends in use of services and
population health
Process Measures
A noteworthy process measure that has recently found its application in the
Psoriasis domain can be mentioned here:
1. HADS - Hospital Anxiety and Depression Scale is used to measure the

“anxiety” and “depression” based on two scales in patients with chronic
diseases and is beginning to find its use in complex psoriasis cases. It
is originally a UK based scale53, and validated in clinical trials of
ustekinumab/Stelara (a biologic)54.
52
"Measure Validity." National Quality Measures Clearinghouse: AHRQ. Web. 16 Nov. 2010.
<http://www.qualitymeasures.ahrq.gov/selecting-and-using/validity.aspx>.
53
Zigmond AS, Snaith RP. The Hospital Anxiety and Depression Scale. Acta Psychiatr Scand 1983;67:361-370
54
"STELARA Significantly Improves Symptoms of Depression, Anxiety and Health-Related Quality of Life in
Patients With Moderate to Severe Psoriasis." Johnson & Johnson - Health Care Products & Pharmaceuticals. 19
May 2010. Web. 17 Nov. 2010.
<http://www.jnj.com/connect/news/all/STELARA-significantly-improves-symptoms-of-depression-anxiety-and-
health-related-quality-of-life-in-patients-with-moderate-to-severe-psoriasis>.
Page 31 of 57
A German study55 used process measures such as treatment location,

frequency, duration, delivery method and cost to the individual to ascertain
patient preferences. When these were analyzed with respect to outcomes
such as plaque reduction in psoriasis, patients were “willing to trade-off
treatment process attributes and side effects risk” to obtain decrease in the
plaque magnitude.
Measures of Outcome
There is little consensus on the kind of outcome measures that would be
suitable to measure Psoriasis and Psoriatic Arthritis and cooperation between
dermatologists and rheumatologists is recommended to achieve standardization of
assessment tools in future.56 However, examples of outcome measures frequently
used in psoriasis evaluation include:
3. Life Quality Indices – These include HR QoL (Health related Quality

of Life), DLQI (Dermatology Life Quality Index) and CDLQI (Children’s
Dermatology Life Quality Index)
A Netherlands based study57 identified that “both clinical outcome measures

(PASI, PGA) and QoL measures (CDLQI) would be adequate in
patient-oriented decision making.”
A related study organized in UK58 found that the QoL of psoriatic children was
worse than diabetes or epilepsy in childhood.
55
(2010), Psychological/social impact of psoriasis. Journal of the European Academy of Dermatology and
Venereology, 24: 60–63.”P-143” doi: 10.1111/j.1468-3083.2010.03718_12.x
56
Philip J. Mease, M. Alan Menter. Quality-of-life issues in psoriasis and psoriatic arthritis: Outcome measures
and therapies from a dermatological perspective. Journal of the American Academy of Dermatology - April
2006 .54(4): 685-704, DOI: 10.1016/j.jaad.2005.10.008)
57
De Jager, M., Van De Kerkhof, P., De Jong, E. and Seyger, M. (2010), A cross-sectional study using the
Children’s Dermatology Life Quality Index (CDLQI) in childhood psoriasis: negative effect on quality of life and
moderate correlation of CDLQI with severity scores. British Journal of Dermatology, 163: 1099–1101.
doi: 10.1111/j.1365-2133.2010.09993.x
58
Beattie PE, Lewis-Jones MS. A comparative study of impairment of quality of life in children with skin disease
and children with other chronic childhood diseases. Br J Dermatol. 2006 Jul;155(1):145-51.
Page 32 of 57
4. WPAI59 – Work Productivity and Activity Impairment : The WPAI

measure is incorporated into the National Health and Wellness Survey
and measures work and productivity of respondents based on five
questions:
i. No. of hours the respondent was absent from work due

to health related problems
ii. No. of hours the respondent was absent from work due
to other reasons
iii. No. of hours the respondent actually worked
iv. The extent to which the health problems affected the

respondent’s productivity outside work
v. The extent to which the health problems affected the

respondent’s ability to do regular activity outside of work
(an IADL measure)
5. WLQ60 – Work Limitations Questionnaire: This questionnaire measures

the impact of chronic diseases and treatment for on-the-job work
performance. The WLQ consists of four demand scales: time, physical,
mental-interpersonal and output61.
6. WTP (Psoriatic Arthritis) – WTP is a “Patient Reported” Outcome

measure that focuses on relative impact of Psoriatic Arthritis in 8
domains of HR-QOL (physical, emotional, sleep, work, social, self-care,
intimacy, and concentration)”62.
59
Developed by Reilly Associates - http://www.reillyassociates.net/
60
Developed by Debra Lerner, PhD : More information available at
http://160.109.101.132/icrhps/resprog/thi/wlq.asp
61
Loeppke R, Hymel PA, Lofland JH, Pizzi LT, Konicki DL, Anstadt GW, Baase C, Fortuna J, Scharf T. Health-related
workplace productivity measurement: General and migraine-specific recommendations from the ACOEM
Expert Panel. J Occup Environ Med. 2003; 45: 349-359.
62
Stephanie W. Hu, BS, Elizabeth W. Holt, MPH†, M. Elaine Husni, MD, MPH‡, Abrar A. Qureshi, MD, MPH.
Willingness-to-Pay Stated Preferences for 8 Health-Related Quality-of-Life Domains in Psoriatic Arthritis: A Pilot
Study. Apr 2010; 9(5): 384-397.
Page 33 of 57
7. PDI – Psoriasis Disability Index: Predominantly a UK based scoring

statistic63, when PDI was used to measure 1196 patients in the United
States, they found good validity, but the sensitivity was not high
enough to measure mild functional limitations. Nijsten T, et al.64
suggest that it is not an optimal test for the US psoriasis population.
8. Dr. Score Patient-Satisfaction Surveys: This unique website

enables patients to rate their satisfaction with medical care, while
protecting their privacy. Available ratings can also be accessed to help
select a physician.
In an editorial by Dubina et al.65 published in London based “Expert Reviews”,

insufficient communication between doctor and patient and inadequate
patient education were identified as barriers to patient satisfaction. The
Dr.Score surveys evaluated in this study identified time spent with the patient
as the most powerful predictor of patient satisfaction. Other features included
ease of access to care, helpfulness of staff and perception of a competent
physician. Treatment regimen was also an important factor including
indicators like convenience of application, fewer doses, minimal side effects
and lower doses.
An outpatient study conducted in Rome66 linked patient satisfaction three days

after the visit to improved health outcomes after four weeks.
Other Measures
Some measures that do not directly focus on clinical performance include:
63
Department of Dermatology, Cardiff University: http://www.dermatology.org.uk/quality/quality-pdi.html
64
Nijsten T, et al. The psychometric properties of the psoriasis disability index in United States patients. J Invest
Dermatol. 2005 Oct;125(4):665-72.
65
Meghan I Dubina, Jenna L O’Neill and Steven R Feldman. Effect of patient satisfaction on outcomes of care.
Expert Review of Pharmacoeconomics & Outcomes Research. Oct 2009. 9(5). 393-395. DOI 10.1586/erp.09.45
(doi:10.1586/erp.09.45)
66
Renzi C, Tabolli S, Picardi A, Abeni D, Puddu P, Braga M. Effects of patient satisfaction with care on
health-related quality of life: a prospective study. J. Eur. Acad. Dermatol. Venereol. 19(6): 712–718 (2005).
Page 34 of 57
1. Phototherapy: A ‘use of services’ measure that calculates the

percentage of patients receiving UVB phototherapy for psoriasis, during
the 6 month time period67.
Future Improvements to Performance Measurement
Dr. Hyde reassured Lily and unraveled the various performance assessment
measures used in psoriasis and how physicians are incentivized using such
approaches to quality improvement. Lily was impressed.
The Performance Quality Reporting Initiative (PQRI)68 undertaken by CMS

(Center for Medicaid and Medicare services) which started in 2007 is a “physician
quality reporting system” and offers an incentive to physicians who perform and
report quality measures for Medicare covered patients. The process is initiated and
approved by the Performance Measurement Task Force (PMTF)69 and endorsed by
the National Quality Forum (NQF)70. Performance measures for Psoriasis and
Psoriatic Arthritis are currently under consideration by the PMTF.
3. Further Discussion
It is interesting to note that these measures focus on patients, rather than the
population, as indicated by Asch et al.71. The authors argue that in doing so, “they
do not consider a population of people who are not patients, do not consider
67
"Phototherapy: percentage of patients receiving UVB phototherapy for psoriasis, during the 6 month time
period.." National Quality Measures Clearinghouse: AHRQ. Australian Council on Healthcare Standards (ACHS).
ACHS clinical indicator users' manual 2010. ULTIMO NSW: Australian Council on Healthcare Standards (ACHS);
2010 Jan. 810 p. Web. 16 Nov. 2010.
<http://www.qualitymeasures.ahrq.gov/content.aspx?id=15821&search=psoriasis>.
68
"Overview Physician Quality Reporting Initiative." Centers for Medicare & Medicaid Services. Web. 17 Nov.
2010. <https://www.cms.gov/PQRI/01_Overview.asp#TopOfPage>.
69
More information available on American Academy of dermatology website:
http://www.aad.org/research/performance_measurement.html
70
http://www.qualityforum.org/
71
Asch DA, Werner RM. Paying for performance in population health: lessons from health care settings. Prev
Chronic Dis 2010;7(5). http://www.cdc.gov/pcd/issues/2010/sep/10_0038.htm.
Page 35 of 57
elements of those people’s health that are not connected to health care they
provide, and do not consider exposures or outcomes that may play out over the life
course”. Further, they suggest the role that Accountable Care Organizations (ACOs)
have to play in defining the outcomes of whole populations and associated costs,
thereby achieving population health goals.
☑ An Accountable Care Organization (ACO) is a group of health care providers that

have entered into a formal arrangement to assume collective responsibility for
the care of a specific group of patients and that receive financial incentives to
improve the quality and efficiency of health care.72
A measure that considers the whole life course of the psoriasis appropriately
puts the true disease impact in perspective. It must be noted that the overall
outcome of the disease is largely influenced by a patient’s coping mechanisms.
Kimball et al. present a good illustration of how coping strategies can influence the
stigma and co-morbidities associated with the disease using their CLCI approach,
mentioned briefly in Chapter 4 (Illness Trajectory Portrayal). It is to be noted that an
interaction between various components on the right hand scale determine a
person’s susceptibility to risk of cumulative impairment. As a person might be coping
well at certain points in time when compared to others, the overall impact is
considered cumulative as it is an accumulation of the yearly impact of these
components. Hence a person who is coping well at present may still be at a high risk
of impairment, due to their cumulative nature.
72
ACO definition by Health Reform GPS: http://www.healthreformgps.org
Page 36 of 57
Figure 8: Coping strategies and their impact on stigma and comorbidities associated
with disease 73
73
Adapted from CLCI concept by Kimball et al.
Page 37 of 57
Chapter 7: Aspects of Access

On her way back from office one day, Lily saw a gentleman struggling to step
out of a bus. Lily impulsively stepped forward to help him and noticed lesions similar
to Stephanie on his knees. Lily asked him what made it so difficult for him to step
out of a bus, to which he replied indifferently “Psoriatic Arthritis” and hurried away.
Lily wondered if state-wide and nation-wide policies existed to help him cope with
his disability.
The National Psoriasis Foundation advocates a number of initiatives on the

federal and State Levels targeted at making essential medications and procedures
more accessible for Psoriatic patients.74
1. Improving Access through National Healthcare Reform

The National Psoriasis Foundation is a member of the National Health Council,
which is constantly advocating meaningful healthcare reform that would support its
five principles to a Patient-Centered approach:
1. Cover everyone
2. Curb costs responsibly
3. Abolish exclusions of pre-existing conditions
4. Eliminate lifetime caps
5. Ensure access to long-term and end-of-life care
2. Affordable Biologic Medication through Medicare Part D

The Affordable Access to Prescription Medications Act of 2009 would place
caps on individual prescriptions and monthly out-of-pocket expenses for public
(including Medicare) or private health insurance.
Further, the legislation proposes to work on the “specialty tier”, which includes
Biologics in this case. This is because even a 33% payment from the individual is
74
More information is available on National Psoriasis Foundation website: www.psoriasis.org
Page 38 of 57
quite burdensome, although Biologics are necessary for high-severity psoriasis

patients to maintain their daily activities and quality of life. The legislation would
introduce an exception to lower the cost of this necessary specialty tier drug and
improve access to biologics.
Also, a proposal is underway that would allow copayment assistance from the
manufacturer even for those with Medicare Part D (who are excluded by Federal law
at present). It is to be noted that this would greatly improve access to biologics as
Medicare covered patients are currently required to pay up to $4350 until
“catastrophic coverage” gets built up and costs are shifted to Medicaid.
3. New York State Initiatives

Governor Paterson of New York State signed a bill on Oct 2nd 2010 outlining
that requests from insurance companies to create specialty drug tiers must be
denied. This would reduce high co-payments and co-insurances for patients who
require essential drugs such as biologics to maintain their quality of life and achieve
longevity.
4. Illinois Legislative Initiative for affordable Phototherapy

The National Psoriasis Foundation was instrumental in initiating the Illinois
State Legislature initiatives to make phototherapy affordable for Psoriasis Patients.
Supported by the American Academy of Dermatology Association, Dermatology
Nurses' Association and the Photomedicine Society, it encourages patients to submit
their experiences related to high copayments for Psoriasis phototherapy. The goal is
to reduce total phototherapy costs borne by patients through state legislation.
An interesting study in France, undertaken in June 2009 evaluated disease

burden on individual patients, and one of the aspects was economic burden.
The mean out-of-pocket expenses for the disease was estimated at
543€/year/patient.75
75
Meyer, N., Paul, C., Feneron, D., Bardoulat, I., Thiriet, C., Camara, C., Sid-Mohand, D., Le Pen, C. and Ortonne,
J. (2010), Psoriasis: an epidemiological evaluation of disease burden in 590 patients. Journal of the European
Academy of Dermatology and Venereology, 24: 1075–1082. doi: 10.1111/j.1468-3083.2010.03600.x
Page 39 of 57
5. Insurance Policy Improvements

The National Psoriasis Foundation works with insurance companies to identify
problematic areas that would limit a patient’s access to care, which may fall into one
of the following broad categories:
1. Policies may require a patient to be unresponsive to one, two or more

treatment regimens before becoming eligible for biologic drugs. This
might prevent a patient from following medical advice or may force him
to purse an inappropriate mode of treatment
2. Sometimes, the area of psoriasis coverage may be used to determine if

the patient is eligible for specialty medication. This might not be an
appropriate criterion as the person may be experiencing debilitating
conditions, while only having a small body surface area affected by
lesions.
3. Treatments might be limited based on time frames or delayed until a

threshold time frame, which might be unfair, given the unpredictable
illness trajectory.
4. Patients might be forced to see participating physicians, who might

possess insufficient experience due to higher copayments associated
with physicians who are not “preferred”.
A number of insurance companies have responded positively by

broadening their coverage such as Aetna, Blue Cross Blue Shield and
CIGNA.
Page 40 of 57
Chapter 8: Resource Utilization

Dr. Hyde was looking at the nationwide inpatient sample at his desk, just after
assisting his friend with a case of erythrodermic psoriasis in the emergency
department. He acknowledged the huge number of high-need psoriasis cases and
wished that dermatologists had a better way to control the illness.
1. Health Delivery Overview

The delivery of care in case of Psoriasis and related disorders needs further
integration. Numerous studies suggest the positive impacts of a co-ordination
between dermatologists, rheumatologists and psychiatrists so as to better manage
the various physical and psychological co-morbidities associated with the disease.
The delivery of healthcare is spread across acute care hospitals for episodic
cases of erythrodermic psoriasis, outpatient clinics for mild to moderate cases of
psoriasis and inpatient care for brief episodes of illness related to low-potency
psoriasis flares. Long-term care organizations also come into play where disability
associated with co-morbidities such as Psoriatic Arthritis occurs.
The payers for care include Medicare, Medicaid and private insurance as well
as substantial out-of-pocket expenses, as discussed earlier. Efforts are underway by
advocacy groups such as the National Psoriasis Foundation to expand Medicare and
Medicaid cover for the underinsured and uninsured, but several discrepancies still
exist and the burden of illness on the patient is significant.
2. Hospital Utilization Data – Nationwide Statistics

AHRQ data highlights several key characteristics during the period
1993-200976. The following information was extracted from the Nationwide inpatient
sample.77
76
Data gathered from HCUPNet database (AHRQ): http://hcupnet.ahrq.gov/
77
HCUP Nationwide Inpatient Sample (NIS). Healthcare Cost and Utilization Project (HCUP). 1993-2009. Agency
for Healthcare Research and Quality, Rockville, MD. www.hcup-us.ahrq.gov/nisoverview.jsp
Page 41 of 57
Nationwide Statistics: Psoriasis

1. The nationwide charges for psoriasis rose from $12,309 to $20,981
with frequent spikes and dips throughout the trend data.
2. Admissions from emergency department rose precisely from 480 to

750 during 1993-2009.
3. Psoriasis showed steady decline in average length of stay from 10.9

days in 1993 to 5.9 days in 2009. However, there seems to be a
marginal increase since 2008.
Nationwide Statistics: Psoriatic Arthritis

1. The average total charges for Psoriatic Arthritis alone rose from
$13,089 in 1993 to $30,687 in the year 2009. However, a decline is
observed since the year 2007 when costs peaked at $ 33,445.
2. Admissions from emergency department for Psoriatic Arthritis increased

from 143 to 369 during the 1993-2006 period, with frequent dips
throughout the period.
3. The average length of stay for Psoriatic Arthritis showed decline from
6.9 to 4.0 from 1993 to 2009.
☑ The notable increase in costs from 2003-2004 to 2007 could be significantly

attributed to the introduction of Biologics (Etanercept/Embrel in 2004 and
Alefacept/Amevive in 2003) and its rapid adoption due to favorable immediate
results for high-need psoriasis cases
Page 42 of 57
Figure 9: Average total charges for Psoriasis during 1993-2009
Figure 10: Average total charges for Psoriatic Arthritis during 1993-2009
Page 43 of 57
Figure 11: Percent admissions from emergency department for Psoriasis
Figure 12: Percent admissions from emergency department for Psoriatic Arthritis
showing overall increase
Page 44 of 57
Figure 13: Average length of stay for Psoriatic patients during 1993-2009 showing
steady decline
Figure 14: Average lengths of stay for Psoriatic Arthritis cases during 1993-2009
The nationwide emergency department sample for 2009 according to

first-listed diagnosis further showed the following about all ED visits for Psoriatic
disease:
Page 45 of 57
1. The largest number of ED visits fell in the age range 18-44 (46.80% for
Psoriasis and 49.73% for Psoriatic Arthritis)
2. Males were more frequently admitted to the emergency department

when compared to females (56-57% males as opposed to 42-43%
females for overall Psoriasis disease)
3. Psoriatic arthritis cases were more often covered by private insurance

(33.82%) while the largest section of the payer pie in terms of
psoriasis cases turned out to be uninsured (33.92%)
4. About 72.33% (Psoriatic Arthritis) and 65.83% (Psoriasis) of the

admissions were recorded from private, not-for-profit hospitals (the
largest proportion). Selection of hospital by high-need cases turned
out to be mostly from a metropolitan area (82.16% for Psoriatic
Arthritis and 83.12% for Psoriasis).
5. The US south region recorded the highest proportion of ED visits

(33%-41%) followed by Midwest and Northeast and the least
percentage was recorded in the western region (14-18%)
Page 46 of 57
Chapter 9: Economic Aspects

Lily was perplexed at the recent news about rising biologic costs. When she
read further and realized that a possibility existed for Stephanie to require similar
medication at a certain point in time, she just prayed that Stephanie never became a
high-need psoriatic patient.
The overall economic costs of an illness are classified based on the following
criteria78:
1. Direct Costs: outlays for treatment. e.g., physicians, hospitals, drugs
2. Indirect Costs or loss or output to the economy due to:
a. Disability (morbidity)
b. Premature death (mortality)
1. Total Psoriasis Healthcare Costs

The economic impact of Psoriasis has been apparent from several studies
conducted over a decade.
A comparative study based on 2003 data79 to determine healthcare utilization

and costs in psoriasis versus general population estimated to $5529 vs. $3509 total
annual costs. The costs were further broken down into medical costs ($3925 vs.
$2687) and drug costs ($1604 vs. $822). Also costs were compared according to
psoriasis severity i.e. severe vs. moderate ($10,593 vs. $5011). Medical costs
amounted to $5854 vs. $3728 and drug costs were estimated at $4738 vs. $1283
according to the disease severity criterion.
78
79
Yua AP, Tanga J, Xiea J, Wua EQ, el al. Economic burden of psoriasis compared to the general population and
stratified by disease severity. Journal of Dermatology Treatment. October 2009, Vol. 25, No. 10 , Pages
2429-2438
Page 47 of 57
The rising healthcare costs in the present scenario are mainly manifested in
the use of Biologics. Bhosle et. al conducted a study in North Carolina80 in 2006 to
examine the costs and utilization patterns for psoriasis patients on the basis of
Medicaid enrollees before and after the use of biologic medications such as
alefacept, efalizumab and etanercept. They found that compliance rates were
significantly higher when compared to other medications (0.66 vs. 0.39). Although
the prescription cost in the post-biologics period was high ($3796.77 vs. $11
706.32), the total healthcare costs rose only roughly by $2000 (($14 662.22 vs. $16
156.10).
A UK based health economics study highlighted the use of biologics based on

their “short-term efficacy” and increase in direct costs from £4207 per annum
to £9500 per patient per year. Interestingly, this resulted in a reduction in the
mean Psoriasis Area and Severity Index from 18.7 to 9.8.81
A Netherlands based study published in 2010 in the British Journal of

Dermatology highlighted that although the total costs to healthcare for
utilizing Biologics in the treatment of Psoriasis were high (€17,712 per patient
per year when compared to €10,146 in the pre-biologic treatment period),
they would have a “cost-neutral” or “cost-saving” effect in the long run by
limiting or even averting the need for hospitalizations.82
80
Bhosle MJ, Feldman SR, Camacho FT et al. Medication adherence and health care costs associated with
biologics in Medicaid‐enrolled patients with psoriasis. Journal of Dermatology Treatment. 2006, Vol. 17, No. 5 ,
Pages 294-301 (doi:10.1080/09546630600954594)
81
Burden, A. (2010), Health economics and the modern management of psoriasis. British Journal of
Dermatology, 163: 670–671. doi: 10.1111/j.1365-2133.2010.10006.x
82
Driessen, R., Bisschops, L., Adang, E., Evers, A., Van De Kerkhof, P. and De Jong, E. (2010), The economic
impact of high-need psoriasis in daily clinical practice before and after the introduction of biologics. British
Journal of Dermatology, 162: 1324–1329. doi: 10.1111/j.1365-2133.2010.09693.x
Page 48 of 57
Direct and Indirect Costs

A study published in 200883 in the Journal of American Academy of
Dermatology estimated the total cost of psoriasis in the US at $11.5 billion due to
medical expenses and lost wages. The “incremental direct medical and indirect work
loss costs” were calculated at $900 and $600 per patient per year respectively. The
study focused on comparison of data from 1998 to 2005 about claims database of 31
self-insured employers using controls based on age and sex in the normal
population. The study concluded that “The incremental cost of psoriasis is
approximately $1500 per patient per year, with work loss costs accounting for 40%
of the cost burden”.
Another study based on self-reported data in May-June 200484 estimated the

work productivity and concluded that psoriasis patients had “significantly more
health-related work productivity impairment, more overall work impairment and
more impairment in activity other than work” when compared to their healthy
counterparts. The average duration of the disease was found to be 15 years and
symptoms were representative of a significantly “negative impact on patient’s quality
of life, with physical functioning and mental functioning”. The results were
comparable to quality of life in cancer, arthritis, hypertension, heart disease, diabetes
mellitus and depression.
The substantial economic impact on indirect costs associated with the disease
is evident. A 2005 study85 estimated work productivity loss pertaining to psoriasis
patients at US$ 7.7 billion. Cost of care and quality of life was directly correlated to
disease severity.
83
Fowler JF, Duh MS, Rovba L et al. The impact of psoriasis on health care costs and patient work loss. Journal
of American Academy of Dermatology. 2008: 29(5) 772-780
84
Wu Y, Mills D, Bala M., Impact of psoriasis on patients' work and productivity: a retrospective, matched
case-control analysis. Am J Clin Dermatol. 2009;10(6):407-10. doi: 10.2165/11310440-000000000-00000.
85
Schmitt JM, Ford DE: Work Limitations and Productivity Loss Are Associated with Health-Related Quality of
Life but Not with Clinical Severity in Patients with Psoriasis. Dermatology 2006;213:102-110 (DOI:
10.1159/000093848)
Page 49 of 57
Several studies have estimated the total healthcare costs including an Italy
based cost-of-illness study which estimated the sum of direct and indirect
costs at €11,434.40 on average per year.86
2. Costs to Individual
A 2006 study of the US population87 suggested that “A therapy that achieves
at least a PASI 35 would be considered cost-effective by conventional standards if it
does not exceed $33,600 in cost”
The French study by Sabatier et al. cited earlier88 evaluated disease burden of
psoriasis on patients using DLQI, WPAI and costs. Out-of-pocket expenses
were estimated at €543. 76.3% patients paid out-of-pocket for specific
products (moisturizers, hygiene)
86
Colombo G, Altomare G, Peris K et al. Moderate and severe plaque psoriasis: cost-of-illness study in Italy.
Therapeutics and Clinical Risk Management 2008:4(2) 559–568
87
Stefan C Weiss, Wingfield Rehmus, and Alexa B Kimball. An Assessment of the Cost-Utility of Therapy for
Psoriasis. Ther Clin Risk Manag. 2006 September; 2(3): 325–328.
88
Page 50 of 57
Chapter 10:Conclusion
It was Stephanie’s fifteenth visit with Dr. Hyde and no significant improvement
was seen in her disease, which now covered 50% of her body surface area. Dr. Hyde
suggested homeopathic treatment based on clinical evidence, and Lily was
convinced.
Ten years later, Lily and Stephanie had come to terms with the disease and
successfully managing it through alternative medicine. The flares were significantly
less and her Psoriatic Arthritis had been arrested. Lily was glad.
The chronic nature of Psoriasis is fascinating for most researchers in the

genetic and pharmacologic domains. A cure does not exist, although various drug
targets are being discovered constantly and nanotechnology seems to make
promises into the future.
Alternative medicines such as homeopathy have also shown significant

achievements in illness control89.
89
Witt CM, Lüdtke R, Willich SN. Homeopathic treatment of patients with psoriasis--a prospective
observational study with 2 years follow-up. J Eur Acad Dermatol Venereol. 2009 May;23(5):538-43. Epub 2009
Feb 2.
Page 51 of 57
Author Information
Safia Fatima Mohiuddin is a Researcher in Bioinformatics and
Healthcare. She has studied global public health concerns:
chronic disease from the public health and epidemiology
perspectives, preventive medicine for health preservation,
holistic healing mechanisms, homeostasis and natural
healing, molecular and biochemical mechanisms of disease,
functional medicine in the investigation of disease cause, and
the significance of integrated medicine to achieve better health outcomes.
Educational Background
BCA (Osmania University), MSc Bioinformatics (IASE University), Graduate Certificate
Healthcare Management (Clarkson University Graduate School USA)
Contact Information
Hyderabad, Telangana 500024, India; Mobile: 8019202091
Email: safia_fatima@yahoo.com; safia.fatima@gmail.com
Page 52 of 57
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View publication stats
lx
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lxi
Driessen, R., Bisschops, L., Adang, E., Evers, A., Van De Kerkhof, P. and De Jong, E. (2010), The
economic impact of high-need psoriasis in daily clinical practice before and after the introduction of
biologics. British Journal of Dermatology, 162: 1324–1329. doi: 10.1111/j.1365-2133.2010.09693.x
lxii
Fowler JF, Duh MS, Rovba L et al. The impact of psoriasis on health care costs and patient work loss.
Journal of American Academy of Dermatology. 2008: 29(5) 772-780
lxiii
Wu Y, Mills D, Bala M., Impact of psoriasis on patients' work and productivity: a retrospective, matched
case-control analysis. Am J Clin Dermatol. 2009;10(6):407-10. doi: 10.2165/11310440-000000000-00000.
lxiv
Schmitt JM, Ford DE: Work Limitations and Productivity Loss Are Associated with Health-Related Quality of
Life but Not with Clinical Severity in Patients with Psoriasis. Dermatology 2006;213:102-110 (DOI:
10.1159/000093848)
lxv
Colombo G, Altomare G, Peris K et al. Moderate and severe plaque psoriasis: cost-of-illness study in
Italy. Therapeutics and Clinical Risk Management 2008:4(2) 559–568
lxvi
Stefan C Weiss, Wingfield Rehmus, and Alexa B Kimball. An Assessment of the Cost-Utility of
Therapy for Psoriasis. Ther Clin Risk Manag. 2006 September; 2(3): 325–328.
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2009 Feb 2.
Page 57 of 57

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Burdened by Chronic Psoriasis: A Primer on Cost, Quality, and Access in the

Article · March 2013

Safia Fatima Mohiuddin

Mathematics with Movement View project

The user has requested enhancement of the downloaded file.

Safia Fatima Mohiuddin

BCA (Osmania University), MSc Bioinformatics (IASE University), Graduate Certificate

Hyderabad, Telangana 500024, India; Mobile: 8019202091

Quality of life being an important aspect is explored and various measures of

The recent initiatives undertaken under the National Psoriasis Foundation to

2. Hypothetical Case Presentation

Chapter 2: Psoriasis Overview

1. Etiology and Pathophysiology

Dr. Lebwohl at the American Academy of Dermatologists defines the

2. Signs and Symptoms

▪ “Pink or red, raised patches of scaly skin”

▪ “Dry, cracked or flaky skin (it may also bleed at times)”

▪ “Skin that burns, is itchy or sore”

▪ “Thick, pitted fingernails”

▪ Plaque: Affecting almost 80% of the psoriasis population, plaque

▪ Guttate: Children and teenagers are vulnerable to guttate psoriasis,

▪ Inverse: Inverse psoriasis is characterized by “bright-red lesions that

▪ Pustular: “White blisters of noninfectious pus surrounded by red skin”

▪ Erythrodermic: The erythrodermic form of psoriasis is particularly

Plaque Guttate Inverse

Figure 1: Psoriasis Clinical Forms5

Chapter 3: Epidemiology of Psoriasis

▪ Psoriasis, being the most prevalent autoimmune disease in the US,

▪ 125 million people worldwide (2-3% of total population) suffer from

▪ 10-30% people afflicted with Psoriasis develop Psoriatic Arthritis

▪ There is higher disease prevalence among Caucasians (2.5%) when

Figure 2: Psoriasis Prevalence

​ A recent epidemiological study in Germany indicated that prevalence of

Henrik K. Blum describes the “force-field and well-being paradigms of health”9

Figure 3: Blum's Characterization of Health Determinants

The Health Determinants with the perspective of Psoriasis as a chronic

Inner Well-Being Paradigm

It is important to differentiate between disease and illness. While the former

Measurable Facets of Health

1. Life expectancy: Severe psoriasis reduces life expectancy by 3.5 years

2. Self-reported Health Status: More than 80 percent of patients report

3. Morbidity (disease): Several physical co-morbidities exist for Psoriasis

Psychological co-morbidities include depression, anxiety, suicide

4. Mental well-being: Psoriasis is associated with strong feelings of anger

5. Social functioning: The National Psoriasis Foundation ascertained that

An interesting Boston based study22 attempted to identify key stages

Kimball measured social connectivity with respect to loss of social

6. Functional Limitations: Psoriasis interferes with several Instrumental

7. Disability: Several ADLs (Activities of Daily Living) are also affected by

8. Spiritual well-being: The overall dysfunction in the fundamental body

Outer Force Field

a. A first degree relative with psoriasis contributes to risk of

a. Winter and colder climates aggravate disease severity

b. Streptococcus infections might start a psoriasis immune system

c. Trauma to normal skin may produce psoriasis in the affected

d. Negative traumatic life experiences have been linked to psoriasis

e. Higher education and household income levels were associated

f. Alcohol consumption, tobacco consumption and stress were

3. Medical Care Services:

a. Systemic corticosteroids, lithium, beta blockers, NSAIDs and

a. Stress plays an important role especially during

Asch et al. define Population Health27 as “the product of a wide range of

A recent epidemiological study in Germany indicated that prevalence of

A 2009 study in France43 culminated on ten recommendations or Evidence

A German study55 used process measures such as treatment location,

A Netherlands based study57 identified that “both clinical outcome measures

In an editorial by Dubina et al.65 published in London based “Expert Reviews”,