Psoriasis eCommunities
Research Objectives:
The aim of this online survey study was to evaluate the user population and type of participation taking place within online support groups for individuals affected by psoriasis.
Drivers:
Psoriasis is a common, incurable condition that carries a heavy psychological burden. Although social support and positive coping styles are associated with better outcomes, the psychological needs of patients are frequently not addressed.
Many patient-initiated support groups exist and offer a source of unity, education and advice. Unfortunately, some psoriasis patients withdraw from social interaction restricting their participation in such groups. The rise in Internet use has accompanied an increase in online support forums that offer a novel way for people to connect. However, little is known about the users or the benefits of these online communities.
Study Overview:
A 29 question survey instrument was developed to evaluate socio-demographic variables, attitudes and usage patterns of participants involved with online support groups. The survey included a number of validated questions to assess socio-demographic information, self-reported health status, psoriasis severity, and disease impact on daily life over the past week (Dermatology Life Quality Index- DLQI). In addition, a novel series of questions evaluated several content areas including: overall attitudes and experiences with online communities; length of use; logon frequency; and nature of online activities. Participants were also asked to report on changes in their psoriasis, severity of their illness, quality of life, and perceived support network since joining online support groups.
Between October 2006 and January 2007, we conducted our cross-sectional survey study. We have identified 5 online psoriasis forums. A link to our online survey was posted on each site. We report results from the first 260 respondents.
Our findings reveal that online support site users are generally young, educated and want access to information. Frequent usage is associated with improved quality of life although is not linked to absolute quality of life or disease severity. Our data demonstrates that psoriasis e-communities offer users both a valuable resource and a source of social support.
Something to consider by health care service providers would be to develop the infrastructure of online support groups. By integrating psychological aspects of chronic diseases with established therapies into community-based applications, we would be offering patients a complete approach to both the mind and body aspects of chronic disease management.