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Patients with hidradenitis suppurative seek advice online, highlighting unmet needs in clinician-patient education regarding daily self-management strategies.

A recent study analyzing patient-generated questions on Reddit has uncovered significant gaps in patient education surrounding hidradenitis suppurativa (HS), particularly in the areas of non-pharmacological management and general disease understanding. For clinicians treating patients with HS, the findings may inform more tailored patient engagement.

HS is marked by recurrent, painful nodules, sinus tracts, and abscesses, often located in intertriginous areas. Its physical toll is often compounded by emotional and social distress, driving patients to seek support outside of traditional medical settings. One such outlet—the “Hidradenitis” subreddit—has become a popular forum for patients to exchange experiences and seek guidance on managing their disease.

“The r/Hidradenitis subreddit is an actively growing community that boasts 40,485 subscribers as of August 2024. As the popularity of Reddit among patients continues to grow, new research is emerging that utilizes Reddit as a source for first-hand accounts of patient experiences,” wrote Vineeth R. Vaidyula and colleagues in Cureus. “Previous studies have performed content analyses on user posts regarding atopic dermatitis, acne, and psoriasis; however, an analysis of HS posts has not been performed.”

To better understand the nature of patient concerns, the investigators conducted a retrospective analysis of the subreddit, identifying 650 questions by 617 users between October 2021 and January 2022. Using the web-scraping tool ParseHub, they extracted and categorized posts into seven thematic areas: uncertainty about symptoms, medications, procedures, non-pharmacologic management, non-specific management, causes and triggers, and miscellaneous.

The largest share of posts (21.4%) centered on non-pharmacologic management strategies, including questions about diet, hygiene routines, clothing choices, and over-the-counter treatments. This was closely followed by non-specific management (19.5%) and miscellaneous questions (19.2%), which included requests for community support and advice on navigating daily life with HS.

“Patients inquired about general advice for managing HS symptoms. Most individuals focused on the general management of flares and disease progression, but individuals also sought advice for managing pain, draining, cleaning, and refilling boils, and managing surfacing and popped lesions,” the researchers said.

Only 13.9% of questions focused on medications, and an even smaller proportion addressed procedures (6.6%) or diagnostic uncertainty (10.6%). Questions related to causes and triggers made up only 8.8% of the dataset.

The researchers emphasized the forum’s role as a vibrant peer-support network but noted their findings also highlight areas where clinical communication may be falling short. Patients appear to turn to online communities for guidance on self-management practices that are either not addressed or underemphasized during clinical encounters.

“While dermatologists often focus primarily on pharmacological and surgical management, these findings highlight that patients desire more information on day-to-day activities such as hygiene, wound care, and clothing, among other things,” the researchers said. “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.”