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Summary

The aim of this survey was to quantify the level of handicap experienced by patients with severe psoriasis, and to assess the value that patients place on their disease using various questionnaire techniques. Dermatologists throughout the U.K. each gave a questionnaire to up to five psoriasis patients, who were either being admitted for in-patient care or were starting systemic therapy. Three hundred and sixty-nine questionnaires were completed. Of the 150 patients currently working, 59·3% had lost a mean of 26 days (SD 21·9) from work during the preceding year because of their psoriasis, and of the 180 not working 33·9% attributed not working to their psoriasis. The mean Psoriasis Disability Index (PDI) score was 38·2% (SD 23·3, n= 248), with the mean sub-scores of the ‘daily activities’ and ‘treatment’ sections being greater than those of the other three sections. Despite having severe psoriasis, the majority of patients felt that it would be worse to have diabetes, asthma or bronchitis than to have psoriasis. Forty-six, 42 and 32% considered it would be either ‘better’ or ‘the same’ to have diabetes, asthma or bronchitis, respectively. However, in those patients who also had the comparative disease, 87, 80 and 77% considered it would be ‘better’, or ‘the same’ to have the comparative disease. Forty-nine per cent of patients (n= 362) stated they would be prepared to spend 2 or 3 h each day on treatment if this might result in normal skin for the rest of the day. Three hundred and sixty-four (98·9%) of patients stated they would prefer to have a complete cure of their psoriasis rather than be given £1000 cash. Seventy-one per cent (n=336) of patients said they would be prepared to pay £1000 or more, and 38% (n=336) said they would pay £10,000, for a cure for their psoriasis. There was a substantial correlation (0·48) between the PDI score and the amount a patient indicated they would pay for a cure.

This survey of patients with severe psoriasis reveals major handicap caused by the disease, and illustrates the extent to which patients would value effective therapy.