Hidradenitis Suppurativa Reddit Support Group: Finding New Meaning in Social Media during the COVID-19 Pandemic


 Hidradenitis suppurativa (HS) can significantly impact quality of life. Reddit allows users with common interests, like HS, to form a community and share information. This has become increasingly important with pandemic-related social isolation. We administered a survey from May 2021– July 2021 to characterize HS patients’ use of Reddit and social media more broadly before and during the COVID-19 pandemic. An analysis of a popular HS support page on Reddit from January 2019– August 2021 was also conducted, analyzing subscribers over time. The rate of subscriber increase was higher before the pandemic. Of 42 patients contacted, 20 patients enrolled (90% female, mean age of 32.4 years) and 18 of the 20 fully completed the survey that was administered. Participants were stratified into two groups: online support group users (n=8) and non-users (n=12). There were no differences in sex, age, education level, antidepressant usage, and overall social media usage between these groups. However, there was a difference in Hurley staging, with over four times as many users reporting a Hurley III staging compared to non-users (p=0.003). Non-users ranked the following as desired features of a social media group more frequently than current users: bandaging/dressing boils, living with HS, medical advice from professionals, causes of HS, and diet (p=0.047, p=0.043, p=0.043, p=0.047, and p=0.013, respectively). This study demonstrates that online support group use is associated with HS of higher clinical severity. Based on the needs/expectations identified in this study, recommendations can be made to providers to help fill any lacunae in clinical care.