the impact of psoriasis on quality of life

The Impact of Psoriasis on Quality of Life

Results of a 1998 National Psoriasis Foundation Patient-Membership Survey

Gerald Krueger, MD; John Koo, MD; Mark Lebwohl, MD; Alan Menter, MD;Robert S. Stern, MD; Tara Rolstad, MBA

Background: Psoriasis can have a profound impact ona patient’s quality of life.

Objectives: To assess patients’ perspectives on the im-pact of psoriasis on their lifestyle and emotional well-being and the social ramifications of living with the dis-ease; to determine the range of therapies available; andto ascertain patients’ satisfaction with the managementof their disease.

Design: A 4-page, self-administered questionnaire wasmailed on July 13 and 14, 1998, to the entire member-ship of the National Psoriasis Foundation (N=40350),and followed by a telephone survey of responders withsevere psoriasis.

Main Outcome Measures: Patients’ perspectives onthe psychosocial impact of psoriasis and the effective-ness of the management of their disease.

Results: Of the 40350 questionnaires mailed out, a re-sponse rate of 43% was realized. The most frequent symp-

toms experienced by the mail-survey respondents werescaling (94%), itching (79%), and skin redness (71%);39% reported that psoriasis covered 10% or more of theirbodies. A total of 6194 patients with severe psoriasis wereentered into the database for the telephone survey. Ofthese, 79% reported that psoriasis had a negative impacton their lives, 40% felt frustrated with the ineffective-ness of their current therapies, and 32% reported that treat-ment was not aggressive enough.

Conclusions: The unprecedented response to the sur-vey provides compelling evidence that individuals withpsoriasis believe that the disease has a profound emo-tional and social as well as physical impact on their qual-ity of life. Many patients with psoriasis, particularly thosewith severe disease, are frustrated with the managementof their disease and by the perceived ineffectiveness oftheir therapies. Physicians may need to improve com-munication with their patients and should reevaluate theirmanagement of psoriasis.

Arch Dermatol. 2001;137:280-284

P SORIASIS AFFECTS more than7 million Americans, withabout 260000 new cases oc-curring each year.1 The dis-ease has a major impact on

patients’ quality of life.2-5 Several studieshave documented the anguish, stress, andenormous disruption people with psoria-sis experience in their daily lives, their re-lationships with others, and their percep-tions of themselves.6 Sensitizing cliniciansto the morbidity of the disease may helpimprove psoriasis management. This in-sight may allow the clinician to offer pa-tients more effective therapies, especiallywhen psoriasis is severe enough to neces-sitate the use of phototherapy or sys-temic agents.

To understand how psoriasis affectsthe quality of life of individuals and to learnabout patients’ perceptions of current thera-pies, the National Psoriasis Foundation

(NPF) conducted a 2-part survey of theirpatient membership. Because this study ex-amines the entire NPF patient population,the largest organization of psoriasis pa-tients in the United States, these findingsare especially important. The NPF is a non-profit organization that works to educatethe public about psoriasis, to support re-search, to build rapport between patientsand physicians, and to improve the qual-ity of life for individuals with psoriasis.

The purpose of this survey of a largepopulation of patients with psoriasis wasto explore patients’ perspectives on the im-pact of psoriasis on their lifestyle, emo-tional well-being, employment, and socialconditions and to gain patients’ perspec-

For editorial commentsee page 352

STUDY

From the Departments ofDermatology, University ofUtah Medical School, Salt LakeCity (Dr Krueger), Universityof California–San Francisco(Dr Koo), Mount Sinai MedicalCenter, New York, NY(Dr Lebwohl), BaylorUniversity Medical Center,Dallas, Tex (Dr Menter), andBeth Israel Deaconess MedicalCenter, Harvard MedicalSchool, Boston, Mass(Dr Stern); and the NationalPsoriasis Foundation, Portland,Ore (Ms Rolstad).

(REPRINTED) ARCH DERMATOL / VOL 137, MAR 2001 WWW.ARCHDERMATOL.COM280

©2001 American Medical Association. All rights reserved.Downloaded From: http://archderm.jamanetwork.com/ on 12/20/2013

tives on the effectiveness of currently available therapiesfor psoriasis. This survey was not intended to be a vali-dated, quality-of-life instrument. A number of studies havedemonstrated the impact of psoriasis on quality of life.2,4,5

However, little has been published to reflect patients’ sat-isfaction with their treatment. This experiential surveyprovides this information, which may prove to be valu-

able in designing treatment approaches for patients withpsoriasis.

RESULTS

DEMOGRAPHICS

The mail-survey respondents consisted of 56% womenand 44% men. Average age of disease onset was 31 years,and respondents were predominantly white (94%). Themedian age of survey respondents was 54 years. The larg-est age groups of mail-survey respondents were aged 55to 74 years (40%) and 35 to 54 years (38%). Smallergroups were aged 18 to 34 years (11%), 75 years or older(11%), and younger than 18 years (1%). (Because ofrounding, percentages may not total 100.) Median fam-ily income of survey respondents was $64000, and 73%had completed some level of college education.

Most mail-survey respondents (88%) reported theyhad psoriasis vulgaris. Other psoriasis types reported in-cluded guttate, localized pustular, inverse, generalizedpustular, and erythrodermic psoriasis. Among the 17425respondents who answered this question, the most fre-quent symptoms experienced were scaling (94%), itch-ing (79%), and skin redness (71%). Other symptoms in-cluded tightness of the skin (31%), bleeding from psoriaticlesions (29%), burning sensation (21%), fatigue (19%),and other (5%). Psoriatic arthritis was reported to havebeen diagnosed by a physician in 31% of respondents.

One determinant of disease severity was the extentof body coverage. To gauge this percentage, respon-dents were instructed to equate the palm of the hand to1% of body coverage; 39% of mail-survey respondentsreplied that their psoriasis covered 10% or more of theirbodies. A follow-up question on classification of diseaseseverity demonstrated that although 39% of respon-dents had 10% or more of their body covered with pso-riasis, which therefore would be classified as severe, only17% of respondents rated their disease as severe. Thus,many patients with severe psoriasis do not identify theirdisease as severe. It can be speculated that this disparitystems, in part, from patients with long-standing diseasewho learn how to live with their disease, and may there-fore de-emphasize its impact. Also, it can be suggestedthat downplaying the severity of the disease may be a cop-ing strategy for dealing with a socially unacceptable con-dition.7 Of the remaining patients surveyed, 50% ratedtheir psoriasis as moderate, 26% as mild, and 8% in re-mission (ie, as having no or minimal symptoms). (Be-cause of rounding, percentages may not total 100.) Therewas no observed difference in the level of severity of pso-riasis reported among the different age groups.

PSYCHOSOCIAL IMPACT OF PSORIASIS

Overall, mail-survey respondents in the 18- to 34-yearage range and the 35- to 54-year age range reported agreater impact of psoriasis on psychosocial aspects of theirlives than respondents 55 years and older. Difficulties inthe workplace, socialization with family members andfriends, exclusion from public facilities, and getting a joband contemplation of suicide accounted for some of the

MATERIALS AND METHODS

A 4-page, self-administered questionnaire was mailedto the entire active 1998 NPF patient membership(N=40350) on July 13 and 14, 1998. Topics cov-ered in the questionnaire included awareness of theNPF, demographics, incidence and severity of pso-riasis, psychosocial impact of the disease, type of pso-riasis, symptoms, and awareness and use of avail-able therapies. Survey replies were accepted throughOctober 19, 1998. Mail surveys were returned by17488 NPF patient members, for an overall mail-survey response rate of 43%. No survey follow-up wasconducted with nonresponders.

Yankelovich Partners, Norwalk, Conn, con-ducted a follow-up telephone survey of patients de-termined to have severe psoriasis. Severe psoriasis wasdefined as psoriasis on more than 10% of the body,erythrodermic psoriasis, generalized pustular pso-riasis, or disease that caused difficulty in at least 3 ofthe following 4 activities: standing, use of hands, sit-ting for long periods of time, or sleeping. In addi-tion, respondents were classified as having severe pso-riasis if their disease was treated by any of thefollowing medications: psoralen in combination withUV-A (PUVA), methotrexate, etretinate, acitretin, orcyclosporine. All participants in the telephone por-tion of the study had completed the mail survey andhad signed an agreement to be contacted by tele-phone.

A subset of 6194 mail-survey respondents withsevere psoriasis were entered into a database. Thesewere then randomly divided into replicates (a sys-tematically selected subsample) and randomly or-dered within each replicate to build a representativelist. Of the 6194 mail respondents selected, 587 weretermed nonviable on the basis of duplications, non-valid area codes, and locations outside the continen-tal United States. Of the 5607 remaining respon-dents, 1369 were used to complete the 502 telephoneinterviews. Telephone interviews were conductedfrom September 1 through 16, 1998. Responses tosome psychosocial and physical activity questionswere analyzed by age-defined cohorts.

All surveys were conducted with a known pso-riasis population and limited to a set number of par-ticipants. Although the results are important be-cause of the large number of psoriasis patientsresponding to this survey, care must be taken in draw-ing inferences to the population of all psoriasis pa-tients. This survey was designed to reflect patients’experiences and perceptions. It was not designed tobe a validated quality-of-life assessment or poweredfor statistical analysis.



problems reported by the respondents (Table1). Youngerpatients more frequently reported difficulty in sexual ac-tivities (27%) in contrast to older respondents, who morefrequently reported difficulties in activities of daily liv-ing such as using their hands or walking (19% and 14%,respectively), as shown in Table 2. Earlier studies alsonoted the decreasing impact of disease with increased age.8

An even greater percentage of those who reported a di-agnosis of psoriatic arthritis reported difficulty using theirhands (66%), standing for long periods of time (64%),and walking (63%).

In the telephone survey, 79% of respondents re-ported that severe psoriasis had an overall negative im-pact on their lives. This negative impact included dis-ruption in daily activities for an average of 10% of thetime in each month. In addition, employed respondentsreported missing an average of 2.3 working days in a 12-month period because of their psoriasis. Among thosewith severe psoriasis, 6% reported discrimination at work.Among respondents not currently employed, 8% indi-cated that psoriasis prevented them from working out-side the home. Approximately 31% of respondents re-ported that they had suffered some degree of financialdistress resulting from their psoriasis. This was more ap-parent in lower income groups, with 42% of respon-dents earning less than $30000 a year, citing financialdistress due to their psoriasis.

Aside from the practical implications of coping withsevere psoriasis, the telephone survey revealed that se-rious emotional issues are involved. Overall, comparedwith other age groups, those aged 18 to 34 years were

more likely to report emotional suffering due to psoria-sis. Among this group, 88% were concerned that the dis-ease would worsen; 81% reported feeling embarrassedwhen people viewed their psoriasis; 90% reported feel-ing frustrated with ineffective treatments; 75% reportedfeeling unattractive; and 54% reported feeling de-pressed.

Socially, patients with severe psoriasis are faced withvarious misconceptions about their condition. Others havemistaken the condition to be contagious, as reported by57% of the respondents; and 48% stated that their pso-riasis had been mistaken by others for a different dis-ease or condition. Among patients who have had theirpsoriasis mistaken for another disease, 24% have had itmistaken for poison ivy and 9% for acquired immuno-deficiency syndrome. These misconceptions may con-tribute to exclusion of psoriasis patients from public fa-cilities. Among those with severe psoriasis, 40% haveexperienced problems with receiving equal service or treat-ment in various service establishments, such as hair sa-lons and barbershops (24%), public pools (19%), andhealth clubs (11%).

MEDICAL TREATMENT OF PSORIASIS

In addition to gaining a greater understanding of the psy-chosocial and work-related issues from the perspectiveof psoriasis patients, an additional objective of this sur-vey was to gauge patients’ perspectives on therapeutic op-tions and the effectiveness of medications currently pre-scribed for psoriasis. A large percentage of the NPF mail-survey respondents reported awareness of varioustherapies (Figure 1). Many respondents reported ex-perience with the full range of treatments, including pho-totherapy and topical and systemic agents.

To capture the level of satisfaction with their therapyand the degree to which it is effective, telephone-surveyrespondents were given a choice of responses ranging from“not at all satisfied” to “very satisfied” and “not well atall” to “very well.” Although 48% responded that theyare very or fairly satisfied with psoriasis treatments, anearly equal number of patients (49%) reported that theyare only somewhat or not at all satisfied (Figure2). Like-wise, when asked to give an estimation of how well their

Calcipotriene

Topical Steroids

Tar

UV-B

PUVA

Methotrexate

Tazarotene

Anthralin

Etretinate

Acitretin

Cyclosporine

0 20

19%

40 60 80 100

% of Patients

Trea

tmen

ts

21%

37%

40%

43%

52%

61%

64%

70%

77%

84%

Figure 1. Percentage of mail-survey respondents who reported having heardabout various psoriasis treatments. PUVA indicates psoralen in combinationwith UV-A.

Table 1. Psychosocial Activities Affected by Psoriasisin the Mail Survey

Activity

Respondents by Age Group, %

18-34 y(n = 1918)

35-54 y(n = 6625)

$55 y(n = 8891)

Interacting in workplace 18 17 8Interacting with family/spouse 15 13 8Making/keeping friends 15 11 7Excluded from a public facility 7 8 6Getting a job 5 4 3Contemplated suicide 10 7 3

Table 2. Activities of Daily Living That Are NegativelyAffected by Psoriasis in the Mail Survey

Activity

Respondents by Age Group, %

18-34 y(n = 1918)

35-54 y(n = 6625)

$55 y(n = 8891)

Sleeping 20 22 22Sexual activities 27 27 13Using hands 8 16 19Walking 7 11 14Sitting for long periods 7 11 15Standing for long periods 5 9 15Performing job duties 10 12 9



current treatment regimen was working, 46% of pa-tients responded “just somewhat well” or “not well at all”(Figure 3). In addition, there was a high degree of dis-satisfaction with the capacity of treatments to control manyof the symptoms of psoriasis. This is discouraging, giventhe efficacy of most systemic therapies (including PUVA,methotrexate, and cyclosporine) and opportunities to usecombination therapy.9 More than 75% improvement invirtually all patients who receive systemic therapy hasbeen described.10

Among patients with severe psoriasis, 78% re-ported feelings of frustration that their treatment doesnot work well enough and does not make their diseasemore manageable. Some of the dissatisfaction with pso-riasis treatments may result from insufficient communi-cation between patient and physician. More than half(59%) of patients believe that their physicians could bemore helpful in assisting them to live with psoriasis. Pa-tients’ frustration may also be heightened by confusionabout different forms of treatment available. A recent re-port found that when phototherapy is prescribed, thereis disparity among treatment centers and physicians inthe type of phototherapy chosen for psoriasis manage-ment.11

As noted above, nearly half of patients with severepsoriasis indicated that they are only somewhat or notat all satisfied with the treatment they are receiving; 32%replied that the treatment they are receiving is not ag-gressive enough. The finding that therapies offered arenot aggressive enough is supported by data that show thattopical medications are the most frequently used pre-scription products, with approximately 87% of patientswith severe psoriasis receiving this form of medication(Figure 4). Patients with severe psoriasis note that topi-cal therapy is a time-consuming (ie, average time spenteach day applying topical agents, 26 minutes), expen-sive, and generally ineffective approach to providing re-lief. In contrast, more aggressive phototherapy and oralmedications are much less commonly used (Figure 4).The survey shows that among the group with severe pso-riasis, only 27% had ever tried methotrexate and only 23%had tried PUVA. Of those who have used these agents,70% reported that methotrexate and 64% that PUVA pro-vided a good to excellent response.

Patients report having been told of therapies that havean improved therapeutic response. Among the treat-ments discussed by the patients’ physicians, UV-B (65%),PUVA (65%), and methotrexate (50%) were the most fre-

quently mentioned. The observation that these treat-ments are much more frequently discussed than pre-scribed may be due to several factors. Speculation aboutreasons would include reluctance by the patient or phy-sician to deal with potential adverse effects, inadequatetraining in the use of these agents, or lack of access to equip-ment needed to provide treatment. In addition, the needfor monitoring of patients receiving these therapies has anunknown impact on the decision to prescribe them.12

Many of the mail-survey respondents (43%) had triedover-the-counter (OTC) medications or alternative thera-pies, such as herbs, relaxation, or acupuncture, to helpcontrol their psoriasis. Of those who had tried OTC oralternative therapies, 52% reported no change in their pso-riasis. However, only 1 respondent in 10 was using thesetypes of therapies at the time of the survey. This indi-cates dissatisfaction with OTC medications and alterna-tive therapies as effective management of these patients’psoriasis.

COMMENT

The size of the population responding to this survey—nearly 18000 patients—and the rate of response (43%)weights the findings. The magnitude of this response pro-vides clinicians with valuable insights into patient per-ceptions of the impact of psoriasis and perceived treat-ment efficacy. The survey was not intended to serve as avalidated quality-of-life instrument, and it was not pow-ered for statistical analysis.

The disruption that patients with psoriasis experi-ence in their daily lives has been documented in a num-ber of studies.2-6 The NPF survey, conducted within a large,well-defined population of psoriasis patients, illustratesmany of the findings of previously published stud-ies.2,4,5 Rather than using standardized quality-of-life scales,such as the Psoriasis Disability Index or the United King-

0 20 40 60 80 100% of Patients

Resp

onse

s

Very Satisfied 26%

Fairly Satisfied 22%

Just Somewhat Satisfied 29%

Not at All Satisfied 20%

Not Sure 3%

Figure 2. Satisfaction of telephone-survey respondents (n=502) withpsoriasis treatments.

0 20 40 60 80 100

% of Patients

Resp

onse

s Fairly Well 32%

Just SomewhatWell 36%

Not Well at All 10%

Very Well 22%

Figure 3. Estimation of efficacy of current treatment regimens bytelephone-survey respondents (n=502).

0 20 40 60 80 100% of Patients

Trea

tmen

ts

Topicals (eg, Creams or Ointments) 87%

Phototherapy orLight Treatment 21%

Oral Medication 18%

Figure 4. Current use of prescription products for their psoriasis bytelephone-survey respondents (n=502).



dom Sickness Impact Profile, which are described in othertrials,2,4,5,13,14 the NPF survey focused on the experi-ences and satisfaction of patients and how they feel abouttheir psoriasis and quality-of-life issues.

Survey questions were focused on the role psoria-sis plays in multiple aspects of these patients’ daily lives,including personal and social relationships, work-related interactions, and emotional behavior. From thepatients’ point of view, physicians often do not fully ap-preciate the seriousness and repercussions of this dis-ease. Depression, frustration with treatment, fear of wors-ening disease, and embarrassment seem pervasive. Diseaseseverity scales serve as a reference point for the physicalaspects of the disease; however, what is perceived as se-vere by a patient may not be perceived as severe by a phy-sician. Although patient perception of disease severity maybe tempered by various factors, clinical assessment shouldincorporate the patient’s perspective.

This survey also demonstrates patient dissatisfactionwith the management of their disease. Patient frustrationis seen in the high rate of patients seeking OTC and alter-native therapies and in the level of patients desiring moreaggressive treatments. An understanding of each patient’sdesire and tolerance for more aggressive medical interven-tion is an important consideration when assessing the ben-efit-risk ratio of available therapeutic options.

Suboptimal disease management and high relapserates may further add to the patient’s frustration and theongoing psychosocial disability associated with psoria-sis. Better understanding and communication betweenpsoriasis patients and their physicians may help to im-prove clinical outcomes in psoriasis. Information gainedfrom this study can be used to demonstrate the impor-tance of physician-patient communication and serve asan adjunct to future research exploring the impact of pso-riasis on quality of life. In addition, this research may serveas a stimulus to explore further therapy and the use ofmore aggressive treatment options.

Accepted for publication June 16, 2000.This study was supported and conducted by the

National Psoriasis Foundation and funded by NovartisPharmaceuticals Corporation, East Hanover, NJ.

Corresponding author and reprints: Gerald Krueger,MD, Department of Dermatology, University of UtahMedical School, 50 N Medical Dr, Salt Lake City, UT84132.

REFERENCES

1. Sander HM, Morris LF, Phillips CM, Harrison PE, Menter A. The annual cost ofpsoriasis. J Am Acad Dermatol. 1993;28:422-425.

2. Finlay AY, Coles EC. The effect of severe psoriasis on the quality of life of 369patients. Br J Dermatol. 1995;132:236-244.

3. Gupta MA, Gupta AK. Depression and suicidal ideation in dermatology patientswith acne, alopecia areata, atopic dermatitis and psoriasis. Br J Dermatol. 1998;139:846-850.

4. Koo J. Population-based epidemiologic study of psoriasis with emphasis on qual-ity of life assessment. Dermatol Clin. 1996;14:485-496.

5. Fortune DG, Main CJ, O’Sullivan TM, Griffiths CE. Quality of life in patients withpsoriasis: the contribution of clinical variables and psoriasis-specific stress. BrJ Dermatol. 1997;137:755-760.

6. Gupta MA, Gupta AK. Age and gender differences in the impact of psoriasis onquality of life. Int J Dermatol. 1995;34:700-703.

7. Wahl A, Hanestad BR, Wiklund I, Moum T. Coping and quality of life in patientswith psoriasis. Qual Life Res. 1999;8:427-433.

8. Mckenna KE, Stern RS. The impact of psoriasis on the quality of life ofpatients from the 16-center PUVA follow-up cohort. J Am Acad Dermatol.1997;36:388-394.

9. Koo JY. Current consensus and update on psoriasis therapy: a perspective fromthe US. J Dermatol. 1999;26:723-733.

10. Tristani-Firouzi P, Krueger GG. Efficacy and safety of treatment modalities forpsoriasis. Cutis. 1998;61:11-21.

11. Stern RS, Beer JZ, Mills DK. Lack of consensus among experts on the choice ofUV therapy for psoriasis. Arch Dermatol. 1999;135:1187-1192.

12. Peters BP, Weissman FG, Gill MA. Pathophysiology and treatment of psoriasis.Am J Health Syst Pharm. 2000;57:645-659.

13. Ashcroft DM, Li Wan Po A, Williams HC, Griffiths CE. Quality of life measuresin psoriasis: a critical appraisal of their quality. J Clin Pharm Ther. 1998;23:391-398.

14. Finlay AY. Quality of life assessments in dermatology. Semin Cutan Med Surg.1998;17:291-296.



the impact of psoriasis on quality of life

Documents