Living with hidradenitis suppurativa: a qualitative exploration of patient burden and impact

Background Hidradenitis suppurativa (HS) is a chronic, inflammatory, skin condition characterized by painful nodules, abscesses, and scarring. Objectives To explore the symptoms, disease burden, and quality of life of patients with HS from clinician and patient perspectives and develop a comprehensive patient-centered HS conceptual model (CM). Methods Qualitative semi-structured interviews were conducted with 6 dermatologists and 28 patients (24 adults [aged ≥ 18 years] and 4 adolescents [aged 12–17 years]). Clinician interviews explored their experiences regarding the diagnosis, progression, and management of HS, whereas patient interviews assessed the signs, symptoms, and impacts of HS on daily life. The interviews were analyzed to identify key symptoms and impacts and develop an HS CM. Results Clinicians identified the key diagnostic symptoms as pain ( n = 6/6), lesions ( n = 4/6), scars ( n = 4/6), and abscesses ( n = 3/6). They prescribed biologics ( n = 5/6), oral or topical antibiotics ( n = 3/6), non-antibiotic topicals ( n = 2/6), or steroids ( n = 2/6) based on HS severity. Clinicians highlighted that diagnostic delays were common in HS ranging from 6 months to 7 years. Most patients reported experiencing pain ( n = 28/28), ruptured boils/drainage ( n = 28/28), swelling/inflammation ( n = 28/28), fatigue/tiredness/low energy ( n = 27/28), bad smells/odors ( n = 26/28), and itchy skin ( n = 26/28). Pain emerged as a major burden for patients, with many reporting ineffective pain management. The final CM included 42 symptom concepts, 53 proximal impacts, and 40 distal impacts. Conclusions The study confirms the substantial symptom burden and impact of HS on daily life, emphasizing persistent unmet treatment needs. The clinician- and patient-informed CM offers a comprehensive framework to support clinical outcomes assessment methods in HS clinical trials.