Factors related to clinical severity and quality of life in hidradenitis suppurativa: findings from a cross-sectional digital survey

Abstract

Hidradenitis suppurativa (HS) is a chronic inflammatory skin condition characterized by painful nodules and abscesses that develop in intertriginous regions. Despite the prevalence and impact of HS, there remains a paucity of patient-oriented data directly analyzing demographic and socioeconomic factors and their association with quality of life. The aim was to investigate associations between medical, demographic, and socioeconomic participant factors and disease severity and quality of life in HS. This cross-sectional, survey-based study of 102 participants was conducted from January 2022 to January 2025. Patients with HS were consecutively identified and sent a survey containing questions related to their experiences living with HS, assessment of treatment success, and interactions with the healthcare system. The survey included a Dermatology Life Quality Index (DLQI) to evaluate correlation with quality of life. Participant EMR data, including Hurley stage, was collected to pair with survey responses. Univariate and multivariate investigation of associations between patient variables and disease outcomes was performed. 102/343 patients (29.7%) completed the survey and were included in the study (mean [SD] age, 38.6 [11.1] years; 12 males [11.8%]). Those with a DLQI > 10 were typically diagnosed at a younger age (OR: 0.957; 95% CI: 0.916–0.999; p = 0.047), had concerns regarding transportation access (OR: 5.471; 95% CI: 1.440–20.783; p = 0.013), and more often required assistance when reading written material from their doctor/pharmacy (OR: 6.298; 95% CI: 1.194–33.238; p = 0.030). Based on our survey, higher DLQI scores– not Hurley stages– were significantly associated with several participant factors including poorer understanding of written material from doctors or pharmacies, lower attendance rates at scheduled medical appointments, and lack of access to reliable transportation. This study was exploratory and hypothesis-generating in nature. As such, additional research involving patient-reported outcomes and relationships between patient factors and disease course is needed to aid in the development of more effective and comprehensive care plans.