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.
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Acknowledgements
We thank the German Psoriasis Patient Association, in particular Mr. Detlev Kunz, for excellent cooperation and support.
Funding
This study was supported by an unrestricted financial grant from the German Psoriasis Patient Association (DPB) following peer-review selection. The funder was not involved in any decision about parts of the study or publications.
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Conflict of interest
M. Augustin and M. A. Radtke are members of the DPB, a German non-profit patient organisation. A. Langenbruch and Z. Foos declare no conflict of interest.
Ethical approval
All procedures performed in studies involving human participants were in accordance with the ethical standards of the institutional and/or national research committee and with the 1964 Helsinki declaration and its later amendments or comparable ethical standards.
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Informed consent was obtained from all individual participants included in the study.
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Langenbruch, A., Radtke, M.A., Foos, Z. et al. Benefits of a membership in a psoriasis patient organisation: a quasi-experimental longitudinal study. Arch Dermatol Res 310, 807–813 (2018). https://doi.org/10.1007/s00403-018-1869-x
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DOI: https://doi.org/10.1007/s00403-018-1869-x