The role of online support communities: benefits of expanded social networks to patients with psoriasis.
OBJECTIVE
To determine the demographics, usage patterns, attitudes, and experiences of online support site users.


METHODS
Online survey. Patients A total of 260 subjects recruited from 5 online psoriasis support groups.


METHODS
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.
Idriss
Shereene Z
SZ
Center for Connected Health, Boston, MA, USA.
Kvedar
Joseph C
JC
Watson
Alice J
AJ
D000293:Adolescent; D000328:Adult; D000368:Aged; D003625:Data Collection; D005260:Female; D006801:Humans; D020407:Internet; D008297:Male; D008875:Middle Aged; D011565:Psoriasis / Q000523:psychology*; D011788:Quality of Life; D012657:Self-Help Groups / Q000706:statistics & numerical data*; D012944:Social Support; D055815:Young Adult