The Role of Online Support Communities: Benefits of Expanded Social Networks to Patients With Psoriasis

January 2009  | Shereene Z. Idriss, BA; Joseph C. Kvedar, MD; Alice J. Watson, MBChB, MRCP, MPH

Arch Dermatol. 2009;145(1):46-51.

Abstract:
Objective:  To determine the demographics, usage patterns, attitudes, and experiences of online support site users.

Design:  Online survey.

Patients:  A total of 260 subjects recruited from 5 online psoriasis support groups.

Main Outcome Measures:  An exploratory analysis was performed to determine demographic and disease characteristics of online support site users. Perceived benefits were also documented.

Results:  The mean (SD) age of respondents was 40.1 (11.5) years (range, 18-75 years), most (75.7%) were white, female (60.4%), and college educated (84.3%). Key factors associated with use of online support sites included availability of resources (95.3%), convenience (94.0%), access to good advice (91.0%), and the lack of embarrassment when dealing with personal issues (90.8%). The most common activities were posting messages (65.0%) and searching for information (63.1%). Nearly half of all respondents perceived improvements in their quality of life (49.5%) and psoriasis severity (41.0%) since joining the site. Intensity of participation in online support activities was associated with improved quality of life (P = .002), but not with improvements in psoriasis severity.

Conclusions:  Our data demonstrate that psoriasis virtual communities offer users both a valuable educational resource and a source of psychological and social support. Such benefits could be further enhanced by physician engagement within these communities

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