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.