Position Statement of the <scp>EADV</scp> Task Forces With External Experts on Quality of Life Measurement in Hidradenitis Suppurativa: An Update

Hidradenitis suppurativa (HS) has a profound negative impact on patients' Quality of Life (QoL). The European Academy of Dermatology and Venereology (EADV) Task Force (TF) on QoL and Patient Oriented Outcomes and TF on Acne, Rosacea and Hidradenitis Suppurativa (ARHS), together with external experts, decided to provide an updated position statement on QoL measurement in HS. In our previous position statement on HS, we stated that a Dermatology Life Quality Index (DLQI) score of 0-1, corresponding to no effect on patient's life according to the DLQI banding descriptions, may be considered as a difficult to reach but important treatment goal: achievement of this goal has since been used as an efficacy criterion in several clinical trials. For many HS treatment methods, there is still a lack of well-organized randomized clinical trials with sufficient participant numbers in which QoL instruments have been used as outcome measures. The DLQI is the most widely used QoL instrument in HS. Clinical recommendations and treatment efficacy are based on its score grading system and minimal clinically important difference (MCID). The HS-specific QoL instruments HSIA, HSQoL-24, HiSQOL, and QoL-HS have a satisfactory number of items for routine clinical use and short recall periods. HiSQOL and HSQoL-24 have score grading systems and the MCID for HiSQOL has been established. The TF on QoL and Patient Oriented Outcomes and TF on ARHS recommend that QoL be assessed in HS: dermatology-specific and HS-specific instruments may be used alongside each other.

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Journal
International Journal of Dermatology
Published
2026-05-17
DOI
https://doi.org/10.1111/ijd.70443
Primary Topic
Hidradenitis Suppurativa and Treatments
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article
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article

Position Statement of the EADV Task Forces With External Experts on Quality of Life Measurement in Hidradenitis Suppurativa: An Update

Nives Pustišek, C I Salavastru, Pavel Viktorovich Chernyshov, Dimitra Koumaki et al.
International Journal of Dermatology
Hidradenitis Suppurativa and Treatments
article

Position Statement of the EADV Task Forces With External Experts on Quality of Life Measurement in Hidradenitis Suppurativa: An Update

Nives Pustišek, C I Salavastru, Pavel Viktorovich Chernyshov, Dimitra Koumaki, Uwe Gieler, Andrew Finlay, Alina Suru, Sam Salek, Serhiy Zemskov, Francesca Sampogna, Åke Svensson, Liana Manolache, Anthony Bewley, Alejandro Molina Leyva, Thrasyvoulos Tzellos, Jacek Szepietowski, Gregor Jemec, R. Darlenski, Stamatios Gregoriou, John R. Ingram, Oksana Zemskova, Michael J. Boffa, Damiano Abeni, Lucia Tomas‐Aragones, Iurii Kuchyn, Matthias Augustin, Ruslan Tsymbaliuk, Servando Marron, Christos C. Zouboulis
article en

Abstract

Hidradenitis suppurativa (HS) has a profound negative impact on patients' Quality of Life (QoL). The European Academy of Dermatology and Venereology (EADV) Task Force (TF) on QoL and Patient Oriented Outcomes and TF on Acne, Rosacea and Hidradenitis Suppurativa (ARHS), together with external experts, decided to provide an updated position statement on QoL measurement in HS. In our previous position statement on HS, we stated that a Dermatology Life Quality Index (DLQI) score of 0-1, corresponding to no effect on patient's life according to the DLQI banding descriptions, may be considered as a difficult to reach but important treatment goal: achievement of this goal has since been used as an efficacy criterion in several clinical trials. For many HS treatment methods, there is still a lack of well-organized randomized clinical trials with sufficient participant numbers in which QoL instruments have been used as outcome measures. The DLQI is the most widely used QoL instrument in HS. Clinical recommendations and treatment efficacy are based on its score grading system and minimal clinically important difference (MCID). The HS-specific QoL instruments HSIA, HSQoL-24, HiSQOL, and QoL-HS have a satisfactory number of items for routine clinical use and short recall periods. HiSQOL and HSQoL-24 have score grading systems and the MCID for HiSQOL has been established. The TF on QoL and Patient Oriented Outcomes and TF on ARHS recommend that QoL be assessed in HS: dermatology-specific and HS-specific instruments may be used alongside each other.

International Journal of Dermatology
Wrocław University of Science and Technology (PL), University of Copenhagen (DK), University of Hertfordshire (GB), Universität Hamburg (DE), Carol Davila University of Medicine and Pharmacy (RO), Queen Mary University of London (GB), Trakia University (BG), Barts Health NHS Trust (GB), Universidad de Zaragoza (ES), Clinical Emergency Hospital Bucharest (RO), Tokuda Hospital (BG), Mater Dei Hospital (MT), Zealand University Hospital (DK), Hospital Madre Teresa (BR), Acibadem City Clinic (BG), University Medical Center Hamburg-Eppendorf (DE), Nordland Hospital (NO), Hospital Universitario Miguel Servet (ES), Hospital Universitario Virgen de las Nieves (ES), Romodanov Neurosurgery Institute of the National Academy of Medical Sciences of Ukraine (UA), Andreas Sygros Hospital (GR), Children's Hospital Zagreb (HR), Skåne University Hospital (SE), University Hospital of Heraklion (GR), San Gallicano Hospital (IT), Medizinische Hochschule Brandenburg Theodor Fontane (DE), Giessen School of Theology (DE), Istituti di Ricovero e Cura a Carattere Scientifico (IT), AGH University of Krakow (PL), Cardiff University (GB), Bogomolets National Medical University (UA), University of Wales (GB)
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Hidradenitis Suppurativa and Treatments
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