Objective: Patient advocacy groups such as the National Psoriasis Foundation (NPF) serve as representatives of those affected by disease and provide information about the condition. Our objective was to assess the extent to which NPF members differ from nonmember patients with psoriasis in their knowledge and use of therapies.
Participants: Using random-digit dialing, we identified and interviewed patients with psoriasis in the general US population. Randomly selected NPF members were also interviewed.
Main outcome measures: Multivariate logistic regression models were used to estimate differences (odds ratios and 95% confidence intervals) in demographic and clinical characteristics and in awareness and use of therapies between members and others diagnosed as having psoriasis.
Results: Of 601 individuals with psoriasis identified from the general population survey, 185 provided a second interview and were defined as nonmembers. We interviewed 289 randomly selected members of the NPF. Although members were significantly older and wealthier and had more extensive disease, they reported the disease to be significantly less of a burden and were more satisfied with therapy than others affected. Compared with nonmembers, members were significantly more likely to have heard of and used most of the 10 therapies assessed. However, the proportion of respondents who were aware of a therapy and who also used it did not differ between groups.
Conclusion: Members of the NPF are better informed and more satisfied with available treatment options than nonmember affected patients.