The Use and Impact of Patient Support Groups in Hidradenitis Suppurativa Patients

Summary: Hidradenitis suppurativa (HS) can be misdiagnosed and undertreated for years leading to challenges in patients’ quality of life and poor emotional well-being. We assessed the impact of a PSG in patients with HS. A single-center, survey study of 52 patients with hidradenitis suppurativa was conducted to understand patient's knowledge of, involvement, and participation in patient support groups as well as questions regarding their quality of life. PSG participants reported limited improvement of their QOL after participation in groups (50%), moderate improvement (25%), and large improvement (25%). The most important qualities of PSGs were “the opportunity to connect with others” (100%) and “sharing common interests with others” (75%). Participants also reported valuing “virtual meetings” (25%), “physician presentations” (25%), and the “encouragement and suggestions from peers for HS management” (25%). When compared to participants who were aware of PSGs but did not participate, PSG participants reported worse QOL measures of sore or painful symptoms in the past week (p=0.01). PSG participants also reported a trend toward greater embarrassment or self-consciousness and clothing choices dictated by the presence of their disease (p=0.08 and 0.18, respectively). Participants in this study who attended PSGs reported poorer QOL than those who did not participate. However, participation in PSGs reported limited to large improvement in their quality of life after attendance. Improving patient awareness of these resources may help patients cope with the chronicity of HS.