Hidradenitis Suppurativa and Reddit: Assessing Gaps in Patient Education

Hidradenitis suppurativa (HS) is a chronic autoinflammatory skin condition distinguished by recurrent lesions, including nodules, sinus tracts, and abscesses, in intertriginous sites. HS can lead to low self-esteem and social isolation and may have deleterious effects on a patient's quality of life. HS continues to be insufficiently controlled leading patients to utilize health-related social media and online forums for educational, emotional, and social support. The open-access forum, Reddit, has become a popular outlet for patients and is a valuable source for identifying potential gaps in patient education.

Information from posts on the "Hidradenitis" Reddit page from October 14, 2021, to January 30, 2022, was extracted using the web scraping tool, ParseHub. Post content was analyzed, and questions were sorted into the following categories: "uncertainty about symptoms," "medications," "procedures," "non-pharmacological management," "non-specific management," "causes and triggers," and "miscellaneous."

A total of 650 questions from 617 posts were analyzed. Posts had an average of 7.1 upvotes and 9.2 comments. The number of questions per category was as follows: nonpharmacological management (139 (21.4%)), non-specific management (127 (19.5%)), miscellaneous (125 (19.2%)), medications (90 (13.9%)), uncertainty about symptoms (69 (10.6%)), causes and triggers (57 (8.8%)), and procedures (43 (6.6%)).

Our analysis of patient questions posted to the HS subreddit revealed that most patient questions were related to disease management, with non-pharmacological management being the most asked-about category. Providers can address this potential gap in patient education by inquiring about helpful products and practices from their patients and serving as a conduit for specific recommendations that align with the literature.