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

BACKGROUND: 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. OBJECTIVES: 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. METHODS: 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. RESULTS: 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. CONCLUSIONS: 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.

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Journal
Journal of the European Academy of Dermatology and Venereology
Published
2026-08-21
DOI
https://doi.org/10.1111/jdv.70663
Primary Topic
Hidradenitis Suppurativa and Treatments
Type
article
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article

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

Emili Masferrer, Isabel Rodríguez-Blanco, Jorge Arroyo‐Andrés, Héctor Perandones‐González et al.
Journal of the European Academy of Dermatology and Venereology
Hidradenitis Suppurativa and Treatments
article

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

Emili Masferrer, Isabel Rodríguez-Blanco, Jorge Arroyo‐Andrés, Héctor Perandones‐González, Nuria No, Eva Vilarrasa, Patricia Garbayo‐Salmons, Mercè Grau‐Pérez, M. Oro‐Ayude, Antonio Martorell, Verónica Mora‐Fernández, Irene Fuertes, Marta Mendieta‐Eckert, Raquel Rivera, Alejandro Molina‐Leyva, Inés Gracia‐Darder, J.C. Pascual, Gemma Martin-Ezquerra, Rafael Botella Estrada, Juli Bassas-Vila, E. Herrera-Acosta, Rafael S. Aguayo-Ortiz, Laura Salgado‐Boquete, Oriol Corral, Yolanda Delgado, Arantxa Muñiz, Marta Ruano, José M. de Castro‐Garrido, Laura M. Pericet‐Fernández, Ignacio Garcia‐Doval, Juan Garcias‐Ladaria, Nalia Domínguez, Lucía Carnero
article en

Abstract

BACKGROUND: 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. OBJECTIVES: 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. METHODS: 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. RESULTS: 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. CONCLUSIONS: 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.

Journal of the European Academy of Dermatology and Venereology
Hospital de Sant Pau (ES), Hospital Universitari Arnau de Vilanova (ES), University Hospital Complex Of Vigo (ES), Hospital Universitari i Politècnic La Fe (ES), Hospital Universitario de Torrejón (ES), Complejo Hospitalario Universitario de Santiago (ES), Hospital Universitario 12 De Octubre (ES), Spanish Academy of Dermatology and Venereology (ES), Hospital Universitario Puerta de Hierro Majadahonda (ES), Hospital Universitario Príncipe de Asturias (ES), Hospital Universitario Araba (ES), Hospital Clínic de Barcelona (ES), Corporació Sanitària Parc Taulí (ES), Hospital Universitario Virgen de las Nieves (ES), Hospital de Manises (ES), Mútua Terrassa (ES), Hospital Universitario de La Princesa (ES), Hospital Del Mar (ES), Hospital de Cruces (ES), Hospital General Universitario de Alicante Doctor Balmis (ES), Hospital Universitario Son Espases (ES), Hospital Universitari Germans Trias i Pujol (ES), Hospital Clínico Universitario Virgen de la Victoria (ES), Complejo Hospitalario de Pontevedra (ES), Complejo Asistencial Universitario de Palencia (ES)
UCB Pharma
Openalex Percentile: Top 8%
Hidradenitis Suppurativa and Treatments
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