The State of the Clinical Management Union: A Cross-Sectional Survey of Persons With Hidradenitis Suppurativa.

Abstract

Background: Hidradenitis suppurativa (HS) is a chronic autoinflammatory condition notable for a high psychosocial burden on patients. This burden is theorized to be linked to patient dissatisfaction due to the paucity of treatment options.

Objectives: This study assessed respondent perceptions of current and emerging HS treatments and their impact on quality of life.

Methods: An IRB-exempt (IRB#: NCR235179) survey was distributed via the HSconnect.org listserv for respondents ≥18 years old. Of 501 responses, 423 (84.4%) completed the entire survey.

Results: Less than 20% of respondents were satisfied or very satisfied with current treatment options (76/423). Of respondents with self-reported disease severity of Hurley stage II or III (51%, 244/483), only 39% were being treated with biologics and/or 26% hormone therapy, indicating undertreatment per current HS guidelines. Most respondents (74%) were unaware of Federal Drug Administration (FDA)-approved treatments and 56% reported that their dermatologist or healthcare provider had not discussed these options with them. More than half of respondents (60%, 254/423) felt it was important to have FDA-approved therapies, believing it would lead to improved physical health (86%), mental health (78%), and/or personal relationships (60%).

Conclusions: In a large cross-sectional survey of patients with HS, dissatisfaction with current treatment options was expressed by a minority of respondents and likely results from both undertreatment and gaps in knowledge of current FDA-approved therapies. Enhancing patient-provider education about off-label and FDA-approved therapies, including established and emerging treatment options, guidelines for use, and their adverse effects, can dramatically improve the quality of life for persons living with HS.   J Drugs Dermatol. 2025;24(4):381-385. doi:10.36849/JDD.8867.