Assessing unmet needs in patients with hidradenitis suppurativa

The diagnosis and management of hidradenitis suppurativa (HS) varies greatly between providers, often resulting in gaps in care including diagnostic delays and poor outcomes. As dermatologists strive to improve HS management, understanding patient perspectives is key. This study aims to characterize existing gaps in HS care as understood through patients’ experiences. This study recruited adult patients with a diagnosis of HS seen at dermatology practices affiliated with Northwestern University. Data were collected through participant surveys and three semi-structured focus groups. Focus group meetings were transcribed verbatim and data were abstracted into themes using conventional content analysis. Six final themes were abstracted after review of 20 pages of transcribed conversation. Four themes centered on improved medical management of HS (access to care, disease-modifying therapies, symptom treatment, prevention of treatment-related adverse events). Two themes centered on supportive care (mental health support, specialized daily wear products). Limitations of this study include single-center recruitment and recall bias introduced by the focus group format. This study identifies six unmet needs for patients with HS and highlights the efficacy of a virtual format for research, conversation, and possibly clinical engagement. Moreover, multiple themes underscore the need for further collaboration across specialties in managing HS.