Factors influencing quality of life in hidradenitis suppurativa: Data from 1188 patients

Hidradenitis suppurativa (HS) is a chronic inflammatory skin disease that severely impacts patients' quality of life (QoL). Instruments commonly used to evaluate QoL in people with dermatological conditions, such as the Dermatology Life Quality Index (DLQI), may not capture the full impact of HS-specific symptoms. The Hidradenitis Suppurativa Quality of Life instrument (HiSQOL) is a validated, HS-specific tool recommended for clinical trials and practice.

To describe baseline QoL, measured by the HiSQOL, in a large cohort of people with HS in Spain; and to identify factors associated with QoL impairment.

We collected baseline data (demographics, clinical characteristics and HiSQOL scores) from the Spanish Hidradenitis Suppurativa Registry (REHS). All data were recorded between June 2023 and September 2025. We analysed associations between severe/very severe QoL impairment (HiSQOL total score 22-68) and various factors.

We included 1188 participants (53.4% female) with a mean age of 37.7 years. The mean total HiSQOL score was 24.4 (standard deviation [SD] 17.0), indicating very severe impairment. Notably, 39.1% of participants with clinically mild disease (Hurley stage I) reported very severe QoL impairment. Factors significantly associated with worse QoL included female sex, smoking, anxiety, depression, specific lesion locations, greater disease severity, greater pain, inflammatory and mixed phenotypes, and a greater number of inflammatory lesions.

This large, real-world study confirms the substantial negative impact of HS on QoL, including in people traditionally classified as having mild disease. Our findings highlight the importance of incorporating patient-reported outcomes such as HiSQOL into comprehensive disease assessment and management.