The role of online support communities: benefits of expanded social networks to patients with psoriasis

Arch Dermatol. 2009 Jan;145(1):46-51. doi: 10.1001/archdermatol.2008.529.

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.

Publication types

  • Research Support, Non-U.S. Gov't

MeSH terms

  • Adolescent
  • Adult
  • Aged
  • Data Collection
  • Female
  • Humans
  • Internet*
  • Male
  • Middle Aged
  • Psoriasis / psychology*
  • Quality of Life
  • Self-Help Groups / statistics & numerical data*
  • Social Support
  • Young Adult