BOSTON, Massachusetts—Forget Facebook and MySpace: for psoriasis patients, the hot social media are online psoriasis support groups. Disease-specific networking sites help psoriasis patients connect with other patients and learn about their disease, and may be contributing to better psoriasis outcomes, according to a report in the January Archives of Dermatology.1

"The dermatology community should consider leveraging the infrastructure of online support groups to build on delivering personalized and integrated medical care to individuals affected by psoriasis."—Shereene Z. Idriss, BA
“The dermatology community should consider leveraging the infrastructure of online support groups to build on delivering personalized and integrated medical care to individuals affected by psoriasis,” conclude the researchers who were led by Shereene Z. Idriss, BA, of the Center for Connected Health and Massachusetts General Hospital, Boston.

The researchers conducted an online survey of 260 adults with psoriasis who participated in one of five online support groups. Participants were mostly white (75.7%), female (60.4%) and college-educated (84.3%).

Psoriasis support group members report disease improvements

A total of 188 (73.7%) study participants reported having moderate or more severe psoriasis, and 206 (79.9%) said their current general health status was average or better. Almost half of the participants perceived improvements in their quality of life and 41% perceived improvements in psoriasis severity since joining an online support community.

When asked why they opted to use an online support site, 95.3% of participants cited availability of resources, 94% cited convenience, 91% said they did so for access to good advice and 90.8% cited lack of embarrassment when dealing with personal issues. Moreover, three-fourths of participants also named anonymity as an important feature of online support use.

Patients often posted or replied to messages or searched for information on these sites. They tended to ask questions as opposed to offering advice. About one-third used online self help groups for social activities including chatting with friends, with one member reporting having met their current love interest this way. Patients with severe psoriasis were highly engaged in these online support communities, the study showed.

"Although online psoriasis support groups are still in their nascent stage, they have captured a loyal and growing audience," the authors conclude.

References
1. Idress SZ, Kvedar JC, Watson AJ. The role of online support communities. Benefits of expanded social networks to patients with psoriasis. Arch Dermatol. 2009;145:46-51.