While an estimated 2.3 million people in the U.S. take part in clinical trials every year, there currently exists no formal requirement to inform them of study results; an oversight that leaves participants confused, frustrated, and, in some cases, lacking information that may be important to their health. In an article published in the Archives
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Online support communities appear to offer both a valuable educational resource and a source of psychological and social support for individuals with psoriasis, according to a report in the January issue of Archives of Dermatology.
“Psoriasis currently affects approximately 0.6 percent to 4.8 percent of the world’s population,” according to background information in the article. In addition to causing skin and joint problems, psoriasis can also impair individuals’ financial status and emotional, physical and sexual well-being. It is estimated that 10 percent of psoriasis patients have contemplated suicide. “As a result, it is a necessity to provide patients with access to psychological support.”
Shereene Z. Idriss, B.A., and colleagues at the Center for Connected Health and Massachusetts General Hospital, Boston, assessed perceived benefits and usage of online psoriasis support groups among 260 adults who participated in one of five such groups (average age 40). Patients’ disease characteristics and demographic information were also recorded.
Participants were mostly white (75.7 percent), female (60.4 percent) and college-educated (84.3 percent). “A total of 188 (73.7 percent) reported having moderate or more severe psoriasis, and 206 (79.9 percent) rated their current general health status as average or better,” the authors write.
Availability of resources was cited as the key factor for use of an online support site. Convenience, access to good advice and lack of embarrassment when dealing with personal issues followed. Three-fourths of participants also named anonymity as an important feature of online support use. Almost half (49.5 percent) of participants perceived improvements in their quality of life and 41 percent perceived improvements in psoriasis severity since joining an online support community.
“Although online psoriasis support groups are still in their nascent stage, they have captured a loyal and growing audience,” the authors conclude. “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.”
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