- Email: [email protected]
Quality of life issues in psoriasis
Quality of life issues in psoriasis Jane Choi, MD, and John Y. M. Koo, MD San Francisco, California Psoriasis is associated with significant psychosocial morbidity and a decrease in health-related quality of life. It is important to view psoriasis as a serious disease and resist the tendency to underestimate its impact on overall patient well-being. The disability experienced by psoriasis sufferers is comparable to that of patients with other chronic illnesses such as heart disease, diabetes, cancer, and depression. Aggressive intervention is warranted in order to improve patient quality of life and decrease the potential for psychosocial sequelae. Health-related quality of life measures are becoming a necessary adjunct to traditional clinical assessments in the evaluation and treatment of psoriasis patients by the individual clinician. They also provide valuable information to government agencies and third party payers in the determination of resource allocation and reimbursement. (J Am Acad Dermatol 2003;49:S57-61).
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here is a common misperception that skin diseases are somehow less serious than other medical illnesses. This can be attributed, in part, to the fact that skin disorders are often chronic but not life-threatening, and so the perceived impact on the patient is more likely to be minimized in the minds of health professionals, third party payers, government policy makers, and the general public. Such a viewpoint is also the product of a value system that assigns more importance to the physical sequelae of disease and tends to overlook the psychosocial aspects of the disease experience. In the case of psoriasis, physicians frequently underestimate the degree of psychological and social morbidity associated with the disease.1 Psoriasis sufferers are cognizant of this, and feel that people in general, including doctors, underestimate the overall impact the disease has on their lives.2 It is evident that the disease burden of psoriasis extends beyond the physical symptoms experienced by the patient. Psoriasis, as well as the therapies necessary to control it, can influence many different spheres of a patient’s life, including career, finances, leisure activities, relationships, and physical intimacy. The subsequent effects on a patient’s social and mental health can be dramatic. The decrement
Abbreviations used: BSA: DLQI: HRQOL: PDI: PQOLQ: QOL: SF-36:
body surface area dermatology life quality index health-related quality of life psoriasis disability index psoriasis quality of life questionnaire quality of life Short Form-36 Health Survey
in overall life quality is poignantly demonstrated in the words of one psoriasis patient. “Well, I don’t exactly know what it’s like to live without psoriasis, but I can imagine it, given the two times I was symptom-free. . .I suddenly found myself singing for joy. It was like getting out of prison. You were free.”3 The impact of psoriasis on patient health-related quality of life (HRQOL) is profound and has been well documented in the scientific literature. The implications of quality of life (QOL) research are equally significant and reinforce the notion that the psychosocial effects of illness are just as important as the physical effects of disease in contributing to overall patient morbidity.
PHYSICAL IMPACT From the Department of Dermatology, University of California-San Francisco. Funding sources: None. Disclosure: Dr Koo has been a clinical researcher, consultant, and speaker for Allergan, Amgen, Biogen, Bristol-Myers Squibb, Centacor, Connetics, Elan, Fujisawa, Galderma, Genentech, GlaxoSmithKlein, ICN, Novartis, and Roche. Reprint requests: John Y. M. Koo, MD, 515 Spruce Street, San Francisco, CA 94118. Copyright © 2003 by the Elsevier Science Inc. 0190-9622/2003/$30.00 ⫹ 0 doi:10.1016/S0190-9622(03)01136-8
Disease severity in psoriasis is classically measured in terms of the physical appearance of the lesions and total body surface area (BSA) involved. However, the clinical severity, as judged by a physician based on these measures, does not always correlate with patient reported degree of impairment.4 Nor do patient perceptions about the cause, consequences, chronicity, cure, or control of their psoriasis necessarily correlate with the physicianrated clinical severity of their disease. This demonS57
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strates that objective clinical severity is not always associated in a linear fashion with a patient’s subjective distress as might be expected.5 This is especially true when dealing with patients case by case and traditional measures of disease severity fail to accurately reflect unique clinical situations. For example, the patient with psoriasis of only the hands would be rated as mild in terms of BSA, but the functional impairment would be greater when compared to a person with the same area of involvement on a less utilized area of the body. In a position paper submitted by Krueger et al,6 the authors concluded that the severity of psoriasis is mainly a QOL issue. By taking the physical and psychosocial effects of psoriasis into account, conflicts between clinical severity ratings and the actual disability experienced by the patient can be reconciled. This discussion is not meant to downplay the extent to which the physical manifestations of psoriasis contribute to patient morbidity. Indeed, it is the physical aspects of the disease that lead to the psychosocial difficulties encountered by the patient. In one study, patients considered the general appearance of their skin to be the worst aspect of having psoriasis.7 Physical symptoms such as pruritus and scaling were mentioned in another study as being the worst or second worst thing about having the disease.2 This is consistent with results from a survey by Gupta et al8 in which pruritus was reported as one of the most distressing symptoms for the psoriasis patient and increased pruritus was associated with increased severity of depression. Besides pruritus, the most pronounced physical effects associated with psoriasis include physical irritation, and physical pain or soreness.2 Rapp et al9 reported that burning sensations, joint pain, and how the bones or joints look were closely associated with a negative impact on the physical component of HRQOL. Pruritus and skin soreness were the symptoms that were associated with a decrease in the mental component of HRQOL. The physical and psychosocial aspects of psoriasis interact and influence one another in reciprocal ways to create an overall clinical picture. There tends to be a strong correlation between patientreported disease severity and the psychosocial impact of the disease. The more severe the psoriasis, as measured by the patient, the more uncomfortable or apprehensive the patient becomes about his or her physical appearance and the more unsightly and excluded the patient feels.2
PSYCHOLOGICAL IMPACT Psoriasis-related decrements in HRQOL can result in significant stress for the patient. The chronic daily
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stress of having to cope with psoriasis, in turn, further contributes to a decrease in HRQOL.10 The afflicted often feel self-conscious, helpless, embarrassed, angry, and frustrated about their disease.2 People with psoriasis suffer from higher rates of depression and body cathexis problems.11 Gupta et al12 found a 9.7% prevalence of a death wish and a 5.5% prevalence of acute suicidal ideation in psoriasis patients. A significant percentage of patients report having moderate to extreme levels of anxiety, depression, and anger, not only during flares, but also while in remission. Merely being diagnosed with psoriasis can result in significant psychological sequelae. In one study, approximately half of the subjects were found to be depressed and anxious simply about having the diagnosis of psoriasis.13 In another study comparing psoriasis patients with general population norms, subjects experienced more problems with work and other daily activities resulting from emotional problems such as anxiety and depression.14 Impairment of QOL has been associated with alcohol consumption, cigarette smoking, and the use of tranquilizers, sleeping pills, and antidepressants.4
SOCIAL IMPACT Stigmatization and social rejection are common themes in the psoriasis disease experience.15 Patients harbor feelings of shame, embarrassment, and lack of confidence because of their illness.3 Such emotions result in significant levels of life disruption as well as social withdrawal.13 In a study of 137 patients with moderate to severe psoriasis, 26.3% of subjects reported that during the previous month, they experienced an episode where “people made a conscious effort not to touch them.” Such episodes were triggered by the presence of psoriasis on a visible part of the body, even if it did not affect the area that was intended to be touched. Social rejection, manifest in the perceived deprivation of human touch, is correlated with more reported life hassles in dealing with psoriasis as well as higher rates of psychological morbidity, including depression.16 Fortune et al17 found that the stress induced in patients by the reaction of others to their psoriasis or physical appearance was the best predictor of disability scores. This highlights the importance of the social stressors borne by the psoriasis patient. Subjects in one study reported that unsightly physical appearance was the worst or second worst thing about having psoriasis.2 Patients in the 18 to 45 year age group tend to experience the most difficulties related to socialization, appearance, occupation, and finances. This might be because the stigma of having psoriasis exerts its greatest influence during
J AM ACAD DERMATOL VOLUME 49, NUMBER 2
early adulthood when patients are establishing their body image and beginning to develop their social networks and careers. Men and women are affected equally by the impact the disease has on appearance and socialization.18 Psoriasis is associated with a decrease in sexual functioning for a significant proportion of patients. In a survey of 120 patients, 40.8% of subjects were sexually affected, reporting a decline in sexual activity. Over 60% of those affected attributed this decrease to the effects psoriasis had on their appearance. Physical symptoms such as joint pain, scaling, and pruritus, as well as associated depression, also negatively affected sexual functioning.19 Ginsberg and Link20 found that out of 100 patients with moderate to severe psoriasis, 19% of subjects had experienced instances of gross social rejection, such as being asked to leave a place because of their disease. This occurred most often at the gym, pool, or hairdresser. The anticipation of rejection and feelings of stigmatization were strongly correlated with disrupted work experience, the seeking of psychiatric help, and alcohol consumption. Patients tended to avoid interpersonal situations or public places where they might encounter rejection, reducing their social and occupational opportunities, further decreasing their overall QOL.20
FINANCIAL IMPACT In the US, it was conservatively estimated that the outpatient cost of psoriasis in 1993 was in the range of $1.6 to $3.2 billion, with an annual cost per patient of $650 to $800.21 The financial burden to the individual patient includes the cost of care, the time needed to care for psoriasis, interference with work, and a decrease in QOL in work and money matters. As expected, the negative impact of psoriasis on financial QOL is greater in those with more severe disease and lower family income.21 In a study of 369 patients with severe psoriasis, the occupational disability caused by the disease was significant. Of the working patients, 59.3% lost time from work during the preceding year because of their psoriasis. Of those who were not working or retired, 33.9% attributed their employment status to their psoriasis.22 Men report more occupational impairment than women, perceiving more criticism for taking time off work or school to seek medical attention and being more afraid of job loss.18
DISABILITY IN PSORIASIS VERSUS OTHER CHRONIC ILLNESSES It has been demonstrated that patients with psoriasis perceive themselves to have poorer health and an overall lower QOL than the general population.23 They are also known to have a degree of morbidity
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that is just as severe as that faced by patients with other chronic medical illnesses. The Short Form-36 (SF-36) Health Survey assesses eight domains of health, including physical functioning, role functioning related to physical status, bodily pain, general health, vitality, social functioning, role functioning related to emotional status, and mental health. These categories can be combined into a Physical Component Summary score and a Mental Component Summary score, with higher scores being indicative of a better QOL.24 In the striking results of a study done by Rapp et al,9 psoriasis patients reported a decrement in physical and mental functioning on the SF-36 that was comparable to that reported by patients with cancer, arthritis, hypertension, heart disease, diabetes, and depression. In fact, the mean SF-36 Health Survey scores for the patients with psoriasis were among the lowest of all groups. Only congestive heart failure patients scored lower in the Physical Component Summary, and only those with depression and chronic lung disease had lower scores in the Mental Component Summary. Finlay and Coles22 found that 46%, 42%, and 32% of psoriasis patients felt it would be “the same” or “better” to have diabetes, asthma, or bronchitis, respectively. In those patients who actually had one of these disorders in addition to psoriasis and would therefore have insight into both disease entities, the percentages rose to 87%, 80%, and 77%.22 In one study, psoriasis patients stated that they were willing to pay approximately 9% to 14% of their average personal income for a cure.25 This is similar to figures quoted by asthma patients in another study, who were willing to pay about 10% to 15% of their average income.26
ASSESSMENT OF HEALTH-RELATED QUALITY OF LIFE IN PSORIASIS PATIENTS Developing validated psychometric tools to assess the HRQOL impact of psoriasis is a relatively recent endeavor. The need for more precise patientreported outcome measures results from an increasing demand for such information from various decision makers, including individual clinicians and researchers, third party payers, technology assessment groups, and government regulatory bodies. Information from HRQOL assessments not only complements the data gained from clinical measures, but also goes beyond these traditional clinical endpoints to formally and scientifically address the specific day to day issues that motivate patients to seek care. HRQOL measures are necessary in order to make fully informed decisions when choosing individual patient treatment options, benchmarking
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the morbidity of entire populations, or even determining the value of new treatments. The Psoriasis Disability Index (PDI) represents one of the first attempts to quantify the QOL impact among psoriasis patients.27 However, one of the important limitations of this instrument stems from the fact that it was developed in the United Kingdom, where the dermatologist has more limited access to the average psoriasis patient than in the US. Therefore, the creation of this instrument was based mainly on severe psoriasis patients, such as those who were hospitalized or undergoing more serious treatment modalities like methotrexate or PUVA phototherapy. Consequently, the PDI appears to have less than optimal sensitivity when used in the average psoriasis outpatient with less extensive involvement. Dermatology-specific, but not psoriasisspecific, instruments such as the Dermatology Life Quality Index (DLQI) appear to have a more limited correlation with the actual severity of a specific skin disease such as psoriasis.28 In view of this, an effort is underway to develop a more valid, reliable, and responsive psoriasis-specific HRQOL instrument with the capacity to discriminate among patients with varying degrees of disease severity as well as the sensitivity to measure important clinical changes from topical or systemic treatments. This instrument, called the Psoriasis Quality of Life Questionnaire (PQOLQ), has recently undergone testing in approximately 500 patients at three major psoriasis clinics.29 It was observed to discriminate among psoriasis patients of different disease severity based on the physician’s rating of severity by BSA or overall lesion assessment. Further evaluation of this instrument’s responsiveness and sensitivity is ongoing in patients receiving topical or systemic treatments and across the spectrum of psoriasis severity. The availability of a psoriasis-specific HRQOL instrument that is applicable through the entire range of psoriasis severity may enhance progress in understanding HRQOL impact, not only of the disease, but also of various therapeutic agents. For dermatologists in clinical practice, it can be a viable instrument, in addition to the physical examination, in the treatment decision-making process.
CONCLUSION It is important for physicians to acknowledge that the impact of psoriasis on the patient’s physical and psychosocial QOL is substantial and, at times, grave. A negative or dismissive attitude about psoriasis from a physician, when sensed by the patient, has been shown to have a negative impact on the mental dimension of QOL.9 While physical measures can give a partial indication of the degree of psychoso-
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cial impairment experienced by the patient, they are not adequate in accurately depicting the extent of morbidity in all cases.30 Optimal therapy can only be achieved by taking the patient perception of illness into account. Even objectively mild disease needs to be aggressively treated if its impact on QOL is judged to be severe by the patient. QOL measures are being assigned increasing importance in the evaluation of health care outcomes.31 They are especially relevant when defining clinical severity and improvement, setting treatment goals, determining resource allocation and reimbursement, and performing cost-benefit analysis of therapies.6 Psoriasis can no longer be considered a “trivial” disease and must be accorded the same importance as other chronic, lifelong diseases by dermatologists, regulatory bodies, and reimbursement agencies. We would like to acknowledge Jonathan W. Kowalski, PharmD, MS, Manager, Global Health Outcomes Strategy & Research at Allergan, Inc for his contribution to the paragraph on assessment of HRQOL in psoriasis patients. REFERENCES 1. Jobling RG. Psoriasis—a preliminary questionnaire study of sufferers’ subjective experience. Clin Exp Dermatol 1976;1:233-6. 2. Koo J. Population-based epidemiologic study of psoriasis with emphasis on quality of life assessment. Dermatol Clin 1996;14: 485-96. 3. Wahl AK, Gjengedal E, Hanestad BR. The bodily suffering of living with severe psoriasis: in depth interviews with 22 hospitalized patients with psoriasis. Qual Health Res 2002;12:250-61. 4. Zachariae R, Zachariae H, Blomqvist K, Davidsson S, Molin L, Mork C, et al. Quality of life in 6497 Nordic patients with psoriasis. Br J Dermatol 2002;146:1006-16. 5. Fortune DG, Richards HL, Main CJ, Griffiths CE. What patients with psoriasis believe about their condition. J Am Acad Dermatol 1998;39(2 pt 1):196-201. 6. Krueger GG, Feldman SR, Camisa C, Duvic M, Elder JT, Gottlieb AB, et al. Two considerations for patients with psoriasis and their clinicians: What defines mild, moderate, and severe psoriasis? What constitutes a clinically significant improvement when treating psoriasis? J Am Acad Dermatol 2000;43(2 pt 1):281-5. 7. Ramsey B, O’Reagan M. A survey of the social and psychological effects of psoriasis. Br J Dermatol 1988;188:195-201. 8. Gupta MA, Schork NJ, Gupta AK. Pruritus in psoriasis. A prospective study of some psychiatric and dermatologic correlates. Arch Dermatol 1988;124:1052-7. 9. Rapp SR, Feldman SR, Exum ML, Fleischer AB Jr, Reboussin DM. Psoriasis causes as much disability as other major medical diseases. J Am Acad Dermatol 1999;41(3 Pt 1):401-7. 10. Gupta MA, Gupta AK. Quality of life of psoriasis patients. J Eur Acad Dermatol Venereol 2000;14:241-2. 11. Devrimci-Ozguven H, Kundakci TN, Kumbasar H, Boyvat A. The depression, anxiety, life satisfaction and affective expression levels in psoriasis patients. J Eur Acad Dermatol Venereol 2000; 14:267-71. 12. Gupta MA, Gupta AK. Depression and suicidal ideation in dermatology patients with acne, alopecia areata, atopic dermatitis and psoriasis. Br J Dermatol 1998;139:846-50.
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13. Fried RG, Friedman S, Paradis C, Hatch M, Lynfield Y, Duncanson C, et al. Trivial or terrible? The psychosocial impact of psoriasis. Int J Dermatol 1995;34:101-5. 14. Wahl A, Loge JH, Wiklund I, Hanestad BR. The burden of psoriasis: a study concerning health-related quality of life among Norwegian adult patients with psoriasis compared with general population norms. J Am Acad Dermatol 2000;43(5 Pt 1):803-8. 15. Schmid-Ott G, Kuensebeck HW, Jaeger B, Ott R, Lamprecht F. Dimensions of stigmatization in patients with psoriasis in a ‘questionnaire on experience with skin complaints. ’ Dermatology 1996;193:304-10. 16. Gupta MA, Gupta AK, Watteel GN. Perceived deprivation of social touch in psoriasis is associated with greater psychologic morbidity: an index of the stigma experience in dermatologic disorders. Cutis 1998;61:339-42. 17. Fortune DG, Main CJ, O’Sullivan TM, Griffiths CE. Quality of life in patients with psoriasis: the contribution of clinical variables and psoriasis-specific stress. Br J Dermatol 1997;137:755-60. 18. Gupta MA, Gupta AK. Age and gender differences in the impact of psoriasis on quality of life. Int J Dermatol 1995;34:700-3. 19. Gupta MA, Gupta AK. Psoriasis and sex: a study of moderately to severely affected patients. Int J Dermatol 1997;36:259-62. 20. Ginsberg IH, Link BG. Psychosocial consequences of rejection and stigma feelings in psoriasis patients. Int J Dermatol 1993;32: 587-91. 21. Feldman SR, Fleischer AB Jr, Reboussin DM, Rapp SR, Bradham DD, Exum ML, et al. The economic impact of psoriasis increases with psoriasis severity. J Am Acad Dermatol 1997;37:564-9.
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22. Finlay AY, Coles EC. The effect of severe psoriasis on the quality of life of 369 patients. Br J Dermatol 1995;132:236-44. 23. O’Neill P, Kelly P. Postal questionnaire study of disability in the community associated with psoriasis. BMJ 1996;313:919-21. 24. Ware JE, Snow KK, Kosinski M, Gandek B. Boston: Mass: The Health Institute, New England Medical Center; 1993. 25. Lundberg L, Johannesson M, Silverdahl M, Hermansson C, Lindberg M. Quality of life, health-state utilities and willingness to pay in patients with psoriasis and atopic eczema. Br J Dermatol 1999;141:1067-75. 26. Blumenschein K, Johannesson M. Relationship between quality of life instruments, health-state utilities and willingness to pay in patients with asthma. Ann Allergy Asthma Immunol 1998;80: 189-94. 27. Finlay AY, Kelly SE. Psoriasis—an index of disability. Clin Exp Dermatol 1987;12:8-11. 28. Finlay AY, Khan GK. Dermatology Life Quality Index (DLQI)—a simple practical measure for routine clinical use. Clin Exp Dermatol 1994;19:210-6. 29. Koo JYM, Menter A, Lebwohl M, Kozma CM, Endzweig C, Abramovits W. The relationship between quality of life and disease severity: results from a large cohort of mild, moderate, and severe psoriasis patients. Submitted for publication 2003. 30. Kirby B, Richards HL, Woo P, Hindle E, Main CJ, Griffiths CE. Physical and psychologic measures are necessary to assess overall psoriasis severity. J Am Acad Dermatol 2001;45:72-6. 31. Finlay AY. The outcomes movement and new measures of psoriasis. J Am Acad Dermatol 1997;36(3 Pt 1):502-3.
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here is a common misperception that skin diseases are somehow less serious than other medical illnesses. This can be attributed, in part, to the fact that skin disorders are often chronic but not life-threatening, and so the perceived impact on the patient is more likely to be minimized in the minds of health professionals, third party payers, government policy makers, and the general public. Such a viewpoint is also the product of a value system that assigns more importance to the physical sequelae of disease and tends to overlook the psychosocial aspects of the disease experience. In the case of psoriasis, physicians frequently underestimate the degree of psychological and social morbidity associated with the disease.1 Psoriasis sufferers are cognizant of this, and feel that people in general, including doctors, underestimate the overall impact the disease has on their lives.2 It is evident that the disease burden of psoriasis extends beyond the physical symptoms experienced by the patient. Psoriasis, as well as the therapies necessary to control it, can influence many different spheres of a patient’s life, including career, finances, leisure activities, relationships, and physical intimacy. The subsequent effects on a patient’s social and mental health can be dramatic. The decrement
Abbreviations used: BSA: DLQI: HRQOL: PDI: PQOLQ: QOL: SF-36:
body surface area dermatology life quality index health-related quality of life psoriasis disability index psoriasis quality of life questionnaire quality of life Short Form-36 Health Survey
in overall life quality is poignantly demonstrated in the words of one psoriasis patient. “Well, I don’t exactly know what it’s like to live without psoriasis, but I can imagine it, given the two times I was symptom-free. . .I suddenly found myself singing for joy. It was like getting out of prison. You were free.”3 The impact of psoriasis on patient health-related quality of life (HRQOL) is profound and has been well documented in the scientific literature. The implications of quality of life (QOL) research are equally significant and reinforce the notion that the psychosocial effects of illness are just as important as the physical effects of disease in contributing to overall patient morbidity.
PHYSICAL IMPACT From the Department of Dermatology, University of California-San Francisco. Funding sources: None. Disclosure: Dr Koo has been a clinical researcher, consultant, and speaker for Allergan, Amgen, Biogen, Bristol-Myers Squibb, Centacor, Connetics, Elan, Fujisawa, Galderma, Genentech, GlaxoSmithKlein, ICN, Novartis, and Roche. Reprint requests: John Y. M. Koo, MD, 515 Spruce Street, San Francisco, CA 94118. Copyright © 2003 by the Elsevier Science Inc. 0190-9622/2003/$30.00 ⫹ 0 doi:10.1016/S0190-9622(03)01136-8
Disease severity in psoriasis is classically measured in terms of the physical appearance of the lesions and total body surface area (BSA) involved. However, the clinical severity, as judged by a physician based on these measures, does not always correlate with patient reported degree of impairment.4 Nor do patient perceptions about the cause, consequences, chronicity, cure, or control of their psoriasis necessarily correlate with the physicianrated clinical severity of their disease. This demonS57
S58 Choi and Koo
strates that objective clinical severity is not always associated in a linear fashion with a patient’s subjective distress as might be expected.5 This is especially true when dealing with patients case by case and traditional measures of disease severity fail to accurately reflect unique clinical situations. For example, the patient with psoriasis of only the hands would be rated as mild in terms of BSA, but the functional impairment would be greater when compared to a person with the same area of involvement on a less utilized area of the body. In a position paper submitted by Krueger et al,6 the authors concluded that the severity of psoriasis is mainly a QOL issue. By taking the physical and psychosocial effects of psoriasis into account, conflicts between clinical severity ratings and the actual disability experienced by the patient can be reconciled. This discussion is not meant to downplay the extent to which the physical manifestations of psoriasis contribute to patient morbidity. Indeed, it is the physical aspects of the disease that lead to the psychosocial difficulties encountered by the patient. In one study, patients considered the general appearance of their skin to be the worst aspect of having psoriasis.7 Physical symptoms such as pruritus and scaling were mentioned in another study as being the worst or second worst thing about having the disease.2 This is consistent with results from a survey by Gupta et al8 in which pruritus was reported as one of the most distressing symptoms for the psoriasis patient and increased pruritus was associated with increased severity of depression. Besides pruritus, the most pronounced physical effects associated with psoriasis include physical irritation, and physical pain or soreness.2 Rapp et al9 reported that burning sensations, joint pain, and how the bones or joints look were closely associated with a negative impact on the physical component of HRQOL. Pruritus and skin soreness were the symptoms that were associated with a decrease in the mental component of HRQOL. The physical and psychosocial aspects of psoriasis interact and influence one another in reciprocal ways to create an overall clinical picture. There tends to be a strong correlation between patientreported disease severity and the psychosocial impact of the disease. The more severe the psoriasis, as measured by the patient, the more uncomfortable or apprehensive the patient becomes about his or her physical appearance and the more unsightly and excluded the patient feels.2
PSYCHOLOGICAL IMPACT Psoriasis-related decrements in HRQOL can result in significant stress for the patient. The chronic daily
J AM ACAD DERMATOL MONTH 2003
stress of having to cope with psoriasis, in turn, further contributes to a decrease in HRQOL.10 The afflicted often feel self-conscious, helpless, embarrassed, angry, and frustrated about their disease.2 People with psoriasis suffer from higher rates of depression and body cathexis problems.11 Gupta et al12 found a 9.7% prevalence of a death wish and a 5.5% prevalence of acute suicidal ideation in psoriasis patients. A significant percentage of patients report having moderate to extreme levels of anxiety, depression, and anger, not only during flares, but also while in remission. Merely being diagnosed with psoriasis can result in significant psychological sequelae. In one study, approximately half of the subjects were found to be depressed and anxious simply about having the diagnosis of psoriasis.13 In another study comparing psoriasis patients with general population norms, subjects experienced more problems with work and other daily activities resulting from emotional problems such as anxiety and depression.14 Impairment of QOL has been associated with alcohol consumption, cigarette smoking, and the use of tranquilizers, sleeping pills, and antidepressants.4
SOCIAL IMPACT Stigmatization and social rejection are common themes in the psoriasis disease experience.15 Patients harbor feelings of shame, embarrassment, and lack of confidence because of their illness.3 Such emotions result in significant levels of life disruption as well as social withdrawal.13 In a study of 137 patients with moderate to severe psoriasis, 26.3% of subjects reported that during the previous month, they experienced an episode where “people made a conscious effort not to touch them.” Such episodes were triggered by the presence of psoriasis on a visible part of the body, even if it did not affect the area that was intended to be touched. Social rejection, manifest in the perceived deprivation of human touch, is correlated with more reported life hassles in dealing with psoriasis as well as higher rates of psychological morbidity, including depression.16 Fortune et al17 found that the stress induced in patients by the reaction of others to their psoriasis or physical appearance was the best predictor of disability scores. This highlights the importance of the social stressors borne by the psoriasis patient. Subjects in one study reported that unsightly physical appearance was the worst or second worst thing about having psoriasis.2 Patients in the 18 to 45 year age group tend to experience the most difficulties related to socialization, appearance, occupation, and finances. This might be because the stigma of having psoriasis exerts its greatest influence during
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early adulthood when patients are establishing their body image and beginning to develop their social networks and careers. Men and women are affected equally by the impact the disease has on appearance and socialization.18 Psoriasis is associated with a decrease in sexual functioning for a significant proportion of patients. In a survey of 120 patients, 40.8% of subjects were sexually affected, reporting a decline in sexual activity. Over 60% of those affected attributed this decrease to the effects psoriasis had on their appearance. Physical symptoms such as joint pain, scaling, and pruritus, as well as associated depression, also negatively affected sexual functioning.19 Ginsberg and Link20 found that out of 100 patients with moderate to severe psoriasis, 19% of subjects had experienced instances of gross social rejection, such as being asked to leave a place because of their disease. This occurred most often at the gym, pool, or hairdresser. The anticipation of rejection and feelings of stigmatization were strongly correlated with disrupted work experience, the seeking of psychiatric help, and alcohol consumption. Patients tended to avoid interpersonal situations or public places where they might encounter rejection, reducing their social and occupational opportunities, further decreasing their overall QOL.20
FINANCIAL IMPACT In the US, it was conservatively estimated that the outpatient cost of psoriasis in 1993 was in the range of $1.6 to $3.2 billion, with an annual cost per patient of $650 to $800.21 The financial burden to the individual patient includes the cost of care, the time needed to care for psoriasis, interference with work, and a decrease in QOL in work and money matters. As expected, the negative impact of psoriasis on financial QOL is greater in those with more severe disease and lower family income.21 In a study of 369 patients with severe psoriasis, the occupational disability caused by the disease was significant. Of the working patients, 59.3% lost time from work during the preceding year because of their psoriasis. Of those who were not working or retired, 33.9% attributed their employment status to their psoriasis.22 Men report more occupational impairment than women, perceiving more criticism for taking time off work or school to seek medical attention and being more afraid of job loss.18
DISABILITY IN PSORIASIS VERSUS OTHER CHRONIC ILLNESSES It has been demonstrated that patients with psoriasis perceive themselves to have poorer health and an overall lower QOL than the general population.23 They are also known to have a degree of morbidity
Choi and Koo S59
that is just as severe as that faced by patients with other chronic medical illnesses. The Short Form-36 (SF-36) Health Survey assesses eight domains of health, including physical functioning, role functioning related to physical status, bodily pain, general health, vitality, social functioning, role functioning related to emotional status, and mental health. These categories can be combined into a Physical Component Summary score and a Mental Component Summary score, with higher scores being indicative of a better QOL.24 In the striking results of a study done by Rapp et al,9 psoriasis patients reported a decrement in physical and mental functioning on the SF-36 that was comparable to that reported by patients with cancer, arthritis, hypertension, heart disease, diabetes, and depression. In fact, the mean SF-36 Health Survey scores for the patients with psoriasis were among the lowest of all groups. Only congestive heart failure patients scored lower in the Physical Component Summary, and only those with depression and chronic lung disease had lower scores in the Mental Component Summary. Finlay and Coles22 found that 46%, 42%, and 32% of psoriasis patients felt it would be “the same” or “better” to have diabetes, asthma, or bronchitis, respectively. In those patients who actually had one of these disorders in addition to psoriasis and would therefore have insight into both disease entities, the percentages rose to 87%, 80%, and 77%.22 In one study, psoriasis patients stated that they were willing to pay approximately 9% to 14% of their average personal income for a cure.25 This is similar to figures quoted by asthma patients in another study, who were willing to pay about 10% to 15% of their average income.26
ASSESSMENT OF HEALTH-RELATED QUALITY OF LIFE IN PSORIASIS PATIENTS Developing validated psychometric tools to assess the HRQOL impact of psoriasis is a relatively recent endeavor. The need for more precise patientreported outcome measures results from an increasing demand for such information from various decision makers, including individual clinicians and researchers, third party payers, technology assessment groups, and government regulatory bodies. Information from HRQOL assessments not only complements the data gained from clinical measures, but also goes beyond these traditional clinical endpoints to formally and scientifically address the specific day to day issues that motivate patients to seek care. HRQOL measures are necessary in order to make fully informed decisions when choosing individual patient treatment options, benchmarking
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the morbidity of entire populations, or even determining the value of new treatments. The Psoriasis Disability Index (PDI) represents one of the first attempts to quantify the QOL impact among psoriasis patients.27 However, one of the important limitations of this instrument stems from the fact that it was developed in the United Kingdom, where the dermatologist has more limited access to the average psoriasis patient than in the US. Therefore, the creation of this instrument was based mainly on severe psoriasis patients, such as those who were hospitalized or undergoing more serious treatment modalities like methotrexate or PUVA phototherapy. Consequently, the PDI appears to have less than optimal sensitivity when used in the average psoriasis outpatient with less extensive involvement. Dermatology-specific, but not psoriasisspecific, instruments such as the Dermatology Life Quality Index (DLQI) appear to have a more limited correlation with the actual severity of a specific skin disease such as psoriasis.28 In view of this, an effort is underway to develop a more valid, reliable, and responsive psoriasis-specific HRQOL instrument with the capacity to discriminate among patients with varying degrees of disease severity as well as the sensitivity to measure important clinical changes from topical or systemic treatments. This instrument, called the Psoriasis Quality of Life Questionnaire (PQOLQ), has recently undergone testing in approximately 500 patients at three major psoriasis clinics.29 It was observed to discriminate among psoriasis patients of different disease severity based on the physician’s rating of severity by BSA or overall lesion assessment. Further evaluation of this instrument’s responsiveness and sensitivity is ongoing in patients receiving topical or systemic treatments and across the spectrum of psoriasis severity. The availability of a psoriasis-specific HRQOL instrument that is applicable through the entire range of psoriasis severity may enhance progress in understanding HRQOL impact, not only of the disease, but also of various therapeutic agents. For dermatologists in clinical practice, it can be a viable instrument, in addition to the physical examination, in the treatment decision-making process.
CONCLUSION It is important for physicians to acknowledge that the impact of psoriasis on the patient’s physical and psychosocial QOL is substantial and, at times, grave. A negative or dismissive attitude about psoriasis from a physician, when sensed by the patient, has been shown to have a negative impact on the mental dimension of QOL.9 While physical measures can give a partial indication of the degree of psychoso-
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cial impairment experienced by the patient, they are not adequate in accurately depicting the extent of morbidity in all cases.30 Optimal therapy can only be achieved by taking the patient perception of illness into account. Even objectively mild disease needs to be aggressively treated if its impact on QOL is judged to be severe by the patient. QOL measures are being assigned increasing importance in the evaluation of health care outcomes.31 They are especially relevant when defining clinical severity and improvement, setting treatment goals, determining resource allocation and reimbursement, and performing cost-benefit analysis of therapies.6 Psoriasis can no longer be considered a “trivial” disease and must be accorded the same importance as other chronic, lifelong diseases by dermatologists, regulatory bodies, and reimbursement agencies. We would like to acknowledge Jonathan W. Kowalski, PharmD, MS, Manager, Global Health Outcomes Strategy & Research at Allergan, Inc for his contribution to the paragraph on assessment of HRQOL in psoriasis patients. REFERENCES 1. Jobling RG. Psoriasis—a preliminary questionnaire study of sufferers’ subjective experience. Clin Exp Dermatol 1976;1:233-6. 2. Koo J. Population-based epidemiologic study of psoriasis with emphasis on quality of life assessment. Dermatol Clin 1996;14: 485-96. 3. Wahl AK, Gjengedal E, Hanestad BR. The bodily suffering of living with severe psoriasis: in depth interviews with 22 hospitalized patients with psoriasis. Qual Health Res 2002;12:250-61. 4. Zachariae R, Zachariae H, Blomqvist K, Davidsson S, Molin L, Mork C, et al. Quality of life in 6497 Nordic patients with psoriasis. Br J Dermatol 2002;146:1006-16. 5. Fortune DG, Richards HL, Main CJ, Griffiths CE. What patients with psoriasis believe about their condition. J Am Acad Dermatol 1998;39(2 pt 1):196-201. 6. Krueger GG, Feldman SR, Camisa C, Duvic M, Elder JT, Gottlieb AB, et al. Two considerations for patients with psoriasis and their clinicians: What defines mild, moderate, and severe psoriasis? What constitutes a clinically significant improvement when treating psoriasis? J Am Acad Dermatol 2000;43(2 pt 1):281-5. 7. Ramsey B, O’Reagan M. A survey of the social and psychological effects of psoriasis. Br J Dermatol 1988;188:195-201. 8. Gupta MA, Schork NJ, Gupta AK. Pruritus in psoriasis. A prospective study of some psychiatric and dermatologic correlates. Arch Dermatol 1988;124:1052-7. 9. Rapp SR, Feldman SR, Exum ML, Fleischer AB Jr, Reboussin DM. Psoriasis causes as much disability as other major medical diseases. J Am Acad Dermatol 1999;41(3 Pt 1):401-7. 10. Gupta MA, Gupta AK. Quality of life of psoriasis patients. J Eur Acad Dermatol Venereol 2000;14:241-2. 11. Devrimci-Ozguven H, Kundakci TN, Kumbasar H, Boyvat A. The depression, anxiety, life satisfaction and affective expression levels in psoriasis patients. J Eur Acad Dermatol Venereol 2000; 14:267-71. 12. Gupta MA, Gupta AK. Depression and suicidal ideation in dermatology patients with acne, alopecia areata, atopic dermatitis and psoriasis. Br J Dermatol 1998;139:846-50.
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