Members of the national psoriasis foundation: more extensive disease and better informed about treatment options.
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.


METHODS
Using random-digit dialing, we identified and interviewed patients with psoriasis in the general US population. Randomly selected NPF members were also interviewed.


METHODS
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.


CONCLUSIONS
Members of the NPF are better informed and more satisfied with available treatment options than nonmember affected patients.
Nijsten
Tamar
T
Beth Israel Deaconess Medical Center, Harvard Medical School, Boston, MA 02215, USA. rstern@bidmc.harvard.edu
Rolstad
Tara
T
Feldman
Steven R
SR
Stern
Robert S
RS
D017281:Cost of Illness; D005260:Female; D005582:Foundations; D007722:Health Knowledge, Attitudes, Practice; D006801:Humans; D016015:Logistic Models; D008297:Male; D008875:Middle Aged; D010344:Patient Advocacy; D017060:Patient Satisfaction; D011565:Psoriasis / Q000503:physiopathology* / Q000523:psychology / Q000628:therapy*; D012720:Severity of Illness Index; D014481:United States