Overall Cumulative Burden of Hidradenitis Suppurativa: An In‐Depth Qualitative Examination

ABSTRACT Background Hidradenitis suppurativa (HS) is a chronic, immune‐mediated condition characterized by inflammation of the intertriginous sites and skin folds, resulting in a range of disease including abscesses, draining tracts, and fibrotic scarring. Patients with HS often experience pain, malodorous drainage from the lesions, and disfigurement, resulting in negative impact on quality of life. Objectives This study seeks to further explore how HS impacts elements such as family relationships, daily life, productivity, environment, education and career decisions, and health care resource use. Methods In‐depth cross‐sectional interviews were conducted with 40 patients diagnosed with HS over a 4‐month period, followed by thematic analysis. Data analysis was conducted until reaching saturation, and no novel themes were presented. Results Analysis of their narratives revealed five major concepts: choices, prevalent negative emotions, companionship, life being ‘on hold’ because of flares, and financial considerations. HS affected patients' decision‐making regarding education, social interactions, treatment options, clothing choices, and living environment. Patients dealt with fear, anxiety, depression, decreased productivity, and various financial burdens due to insurance costs. Patients expressed feelings of both social support and isolation regarding their diagnosis. A limitation includes that this is a single center study. Conclusions Hearing directly from patients with HS about their adversity may promote greater awareness of the serious consequences this dermatologic condition has on patients.