Benefits of a membership in a psoriasis patient organisation: a quasi-experimental longitudinal study

Abstract

Background and Objectives

Patient organisations play an important role in supporting patients with chronic diseases and allow information transfer beyond professional care structures. Until now, only few studies have investigated the benefits of a dermatological patient organisation. In this study, potential benefits of joining the German Psoriasis Association (Deutscher Psoriasis Bund e. V., DPB) were surveyed.

Methods

The quasi-experimental longitudinal design included four groups of individuals suffering from psoriasis: those (1) with DPB membership of 5 years, (2) with voluntary new membership, (3) with randomly awarded membership, and (4) without membership. Participants were interviewed two times in 12 months, about quality of life, depression, participation in patient education classes, health status, and treatment benefits.

Results

295 individuals participated (mean age 54 years; 50.3% females). At the outset of the study, participants with voluntary new membership rated their health status worse and showed higher depression scores than those with awarded membership. The proportion of participants who joined patient education classes only increased in the group of long-term members. Health status worsened in the group of non-members, and it improved in the group of those with awarded and voluntary new membership. Treatment benefit only increased in the voluntary new members group.

Conclusions

DPB membership seems to be associated with some relief from psoriasis-related strains, particularly in the group of those who joined voluntarily. This could be due to the fact that individuals who become members out of their own volition are more likely to seek information and, therefore, benefit from their active engagement.