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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

Arch Dermatol. 2001;137:280-284.

Background  Psoriasis can have a profound impact on a patient's quality of life.

Objectives  To assess patients' perspectives on the impact of psoriasis on their lifestyle and emotional well-being and the social ramifications of living with the disease; to determine the range of therapies available; and to ascertain patients' satisfaction with the management of their disease.

Design  A 4-page, self-administered questionnaire was mailed on July 13 and 14, 1998, to the entire membership of the National Psoriasis Foundation (N = 40 350), and followed by a telephone survey of responders with severe psoriasis.

Main Outcome Measures  Patients' perspectives on the psychosocial impact of psoriasis and the effectiveness of the management of their disease.

Results  Of the 40 350 questionnaires mailed out, a response rate of 43% was realized. The most frequent symptoms experienced by the mail-survey respondents were scaling (94%), itching (79%), and skin redness (71%); 39% reported that psoriasis covered 10% or more of their bodies. A total of 6194 patients with severe psoriasis were entered into the database for the telephone survey. Of these, 79% reported that psoriasis had a negative impact on their lives, 40% felt frustrated with the ineffectiveness of their current therapies, and 32% reported that treatment was not aggressive enough.

Conclusions  The unprecedented response to the survey provides compelling evidence that individuals with psoriasis believe that the disease has a profound emotional and social as well as physical impact on their quality of life. Many patients with psoriasis, particularly those with severe disease, are frustrated with the management of their disease and by the perceived ineffectiveness of their therapies. Physicians may need to improve communication with their patients and should reevaluate their management of psoriasis.

From the Departments of Dermatology, University of Utah Medical School, Salt Lake City (Dr Krueger), University of California–San Francisco (Dr Koo), Mount Sinai Medical Center, New York, NY (Dr Lebwohl), Baylor University Medical Center, Dallas, Tex (Dr Menter), and Beth Israel Deaconess Medical Center, Harvard Medical School, Boston, Mass (Dr Stern); and the National Psoriasis Foundation, Portland, Ore (Ms Rolstad).

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