Stigmatization and perceived health status in patients with hidradenitis suppurativa: an observational multicenter study in Europe

Servando E Marron^{1

2

3}, Tamara Gracia-Cazaña^{2

3}, Francesca Sampogna⁴, Christina Schut⁵, Joerg Kupfer⁵, Florence J Dalgard^{6

7}, Anthony Bewley⁸, Sylvia van Beugen⁹, Uwe Gieler¹⁰, Lars Lien^{11

12}, Sonja Ständer¹³, Nienke Vulink¹⁴, Andrew Y Finlay¹⁵, Franz J Legat¹⁶, Geraldine Titeca¹⁷, Gregor B Jemec^{18

19}, Laurent Misery²⁰, Csanad Szabo^{21

22}, Vesna Grivcheva-Panovska²³, Saskia Spillekom-van Koulil²⁴, Flora Balieva^{25

26}, Jacek C Szepietowski²⁷, Adam Reich²⁸, Bárbara Roque Ferreira²⁹, Andrey Lvov^{30

31}, Dmitry Romanov^{32

33

34}, Ake Svensson³⁵, Ilknur K Altunay³⁶, Andrew R Thompson³⁷, Claudia Zeidler¹³, Lucía Tomas-Aragones^{1

38}; ESDAP Study Collaborators

Affiliations

¹ Aragon Psychodermatology Research Group Zaragoza, Zaragoza, Spain.
² Department of Dermatology, University Hospital Miguel Servet, IIS Aragón, Zaragoza, Spain.
³ Department of Medicine, Psychiatry and Dermatology, University of Zaragoza, Zaragoza, Spain.
⁴ Clinical Epidemiology Unit, Istituto Dermopatico dell'Immacolata (IDI)-IRCCS, Rome, Italy.
⁵ Institute of Medical Psychology, Justus-Liebig-University, Gießen, Germany.
⁶ Division of Mental Health and Addiction, Vestfold Hospital Trust, Tønsberg, Norway.
⁷ Department of Dermatology and Venereology, Skane University Hospital, Malmo, Sweden.
⁸ Barts Health NHS Trust & Queen Mary University of London, London, UK.
⁹ Health, Medical and Neuropsychology Department, Leiden University, Leiden, The Netherlands.
¹⁰ VitosKlinik, Gießen, Germany.
¹¹ Faculty of Social and Health Sciences, Inland Norway University of Applied Sciences, Elverum, Norway.
¹² Norwegian National Advisory Unit on Concurrent Substance Abuse and Mental Health Disorders, Innlandet Hospital Trust, Brumunddal, Norway.
¹³ Department of Dermatology and Center for Chronic Pruritus, University Hospital Münster, Münster, Germany.
¹⁴ Amsterdam University Medical Centers, University of Amsterdam, Amsterdam, The Netherlands.
¹⁵ Division of Infection and Immunity, School of Medicine, Cardiff University, Cardiff, UK.
¹⁶ Department of Dermatology, Medical University of Graz, Graz, Austria.
¹⁷ Clinique Notre Dame de Grâce, Gosselies, Belgium.
¹⁸ Department of Dermatology, Zealand University Hospital, Roskilde, Denmark.
¹⁹ Faculty of Health and Medical Sciences, University of Copenhagen, Copenhagen, Denmark.
²⁰ Department of Dermatology, University Hospital of Brest, Brest, France.
²¹ Institute of Psychology, University of Szeged, Szeged, Hungary.
²² Department of Dermatology and Allergology, University of Szeged, Szeged, Hungary.
²³ University St Cyril and Methodius, School of Medicine, PHI University Clinic of Dermatology, Skopje, North Macedonia.
²⁴ Radboud Institute for Health Sciences, Department of Medical Psychology, Radboud University Medical Centre, Nijmegen, The Netherlands.
²⁵ Department of Dermatology, Stavanger University Hospital, Stavanger, Norway.
²⁶ Faculty of Health Sciences, University of Stavanger, Stavanger, Norway.
²⁷ Department of Dermatology, Venereology and Allergology, Wroclaw Medical University, Wroclaw, Poland.
²⁸ Department of Dermatology, Institute of Medical Sciences, Medical College of Rzeszów University, Rzeszów, Poland.
²⁹ Department of Dermatology, Coimbra University Hospital, Coimbra, Portugal.
³⁰ Central State Medical Academy of Department of PresidentialAffairs, Moscow, Russia.
³¹ Medical Research and Educational Centre, Lomonosov Moscow State University, Moscow, Russia.
³² Department of Psychiatry and Psychosomatics, I.M. SechenovFirst Moscow State Medical University (Sechenov University), Moscow, Russia.
³³ Department of Boundary Mental Conditions and PsychosomaticDisorders, Mental Health Research Centre, Moscow, Russia.
³⁴ International Institute of Psychosomatic Health, Moscow, Russia.
³⁵ Department of Dermatology, Skåne University Hospital, Malmo, Sweden.
³⁶ ŞişliHamidiyeEtfal Training and Research Hospital, Dermatology and VenereologyClinic, University of Health Sciences, Istanbul, Turkey.
³⁷ South Wales Clinical Psychology Training Programme, Cardiff & Vale University Health Board & School of Psychology, Cardiff University, Cardiff, UK.
³⁸ Department of Psychology, University of Zaragoza, Zaragoza, Spain.

PMID: 39526558
DOI: 10.1111/ijd.17569

Observational Study

Stigmatization and perceived health status in patients with hidradenitis suppurativa: an observational multicenter study in Europe

Servando E Marron et al. Int J Dermatol. 2025 May.

. 2025 May;64(5):861-869.

doi: 10.1111/ijd.17569. Epub 2024 Nov 11.

Authors

Affiliations

¹ Aragon Psychodermatology Research Group Zaragoza, Zaragoza, Spain.
² Department of Dermatology, University Hospital Miguel Servet, IIS Aragón, Zaragoza, Spain.
³ Department of Medicine, Psychiatry and Dermatology, University of Zaragoza, Zaragoza, Spain.
⁴ Clinical Epidemiology Unit, Istituto Dermopatico dell'Immacolata (IDI)-IRCCS, Rome, Italy.
⁵ Institute of Medical Psychology, Justus-Liebig-University, Gießen, Germany.
⁶ Division of Mental Health and Addiction, Vestfold Hospital Trust, Tønsberg, Norway.
⁷ Department of Dermatology and Venereology, Skane University Hospital, Malmo, Sweden.
⁸ Barts Health NHS Trust & Queen Mary University of London, London, UK.
⁹ Health, Medical and Neuropsychology Department, Leiden University, Leiden, The Netherlands.
¹⁰ VitosKlinik, Gießen, Germany.
¹¹ Faculty of Social and Health Sciences, Inland Norway University of Applied Sciences, Elverum, Norway.
¹² Norwegian National Advisory Unit on Concurrent Substance Abuse and Mental Health Disorders, Innlandet Hospital Trust, Brumunddal, Norway.
¹³ Department of Dermatology and Center for Chronic Pruritus, University Hospital Münster, Münster, Germany.
¹⁴ Amsterdam University Medical Centers, University of Amsterdam, Amsterdam, The Netherlands.
¹⁵ Division of Infection and Immunity, School of Medicine, Cardiff University, Cardiff, UK.
¹⁶ Department of Dermatology, Medical University of Graz, Graz, Austria.
¹⁷ Clinique Notre Dame de Grâce, Gosselies, Belgium.
¹⁸ Department of Dermatology, Zealand University Hospital, Roskilde, Denmark.
¹⁹ Faculty of Health and Medical Sciences, University of Copenhagen, Copenhagen, Denmark.
²⁰ Department of Dermatology, University Hospital of Brest, Brest, France.
²¹ Institute of Psychology, University of Szeged, Szeged, Hungary.
²² Department of Dermatology and Allergology, University of Szeged, Szeged, Hungary.
²³ University St Cyril and Methodius, School of Medicine, PHI University Clinic of Dermatology, Skopje, North Macedonia.
²⁴ Radboud Institute for Health Sciences, Department of Medical Psychology, Radboud University Medical Centre, Nijmegen, The Netherlands.
²⁵ Department of Dermatology, Stavanger University Hospital, Stavanger, Norway.
²⁶ Faculty of Health Sciences, University of Stavanger, Stavanger, Norway.
²⁷ Department of Dermatology, Venereology and Allergology, Wroclaw Medical University, Wroclaw, Poland.
²⁸ Department of Dermatology, Institute of Medical Sciences, Medical College of Rzeszów University, Rzeszów, Poland.
²⁹ Department of Dermatology, Coimbra University Hospital, Coimbra, Portugal.
³⁰ Central State Medical Academy of Department of PresidentialAffairs, Moscow, Russia.
³¹ Medical Research and Educational Centre, Lomonosov Moscow State University, Moscow, Russia.
³² Department of Psychiatry and Psychosomatics, I.M. SechenovFirst Moscow State Medical University (Sechenov University), Moscow, Russia.
³³ Department of Boundary Mental Conditions and PsychosomaticDisorders, Mental Health Research Centre, Moscow, Russia.
³⁴ International Institute of Psychosomatic Health, Moscow, Russia.
³⁵ Department of Dermatology, Skåne University Hospital, Malmo, Sweden.
³⁶ ŞişliHamidiyeEtfal Training and Research Hospital, Dermatology and VenereologyClinic, University of Health Sciences, Istanbul, Turkey.
³⁷ South Wales Clinical Psychology Training Programme, Cardiff & Vale University Health Board & School of Psychology, Cardiff University, Cardiff, UK.
³⁸ Department of Psychology, University of Zaragoza, Zaragoza, Spain.

PMID: 39526558
DOI: 10.1111/ijd.17569

Abstract

Introduction: Hidradenitis suppurativa (HS) can severely affect the quality of life (QoL) and is linked to psychological distress, including anxiety, depression, and reduced self-esteem. Stigmatization due to physical appearance may significantly contribute to the psychological burden and impact on QoL for HS patients. This study investigates the association between stigmatization, depression, anxiety, and health- and disease-related variables among HS patients in Europe.

Patients and methods: This observational cross-sectional multicenter study was conducted across 22 dermatological outpatient clinics in 17 European countries. Data collected included sociodemographic variables, general health variables, disease-related variables, perceived stigmatization (PSQ), and mental health (PHQ-2, GAD-2).

Results: Of the 5487 dermatological patients, 142 (2.6%) were diagnosed with HS, and data from 135 patients (70.1% women, mean age 38.2 years) who completed the PSQ questionnaire were analyzed. Scores on the stigmatization measure indicated that significant stigmatization levels were present in the sample. Linear regression models revealed a significant relationship between stigmatization and both the duration of HS and the presence of itch. Similar findings were noted for the PSQ "confused/staring behavior" scale with depression. The PSQ "absence of friendly behavior" scale was inversely associated with general health status, whereas the "hostile behavior" scale was positively linked to depression.

Conclusion: HS patients experience significant stigmatization linked to disease duration, itch, and depression. Comprehensive management, including screening for psychosocial co-morbidity, is essential, as is providing access to psychological interventions that support patients to both manage internal distress and the potential reactions of others.

Keywords: acne inversa; burden; hidradenitis suppurativa; itch; perceived health status; stigmatization; stress.

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References

1. Jemec GBE, Kimball AB. Hidradenitis suppurativa: epidemiology and scope of the problem. J Am Acad Dermatol. 2015;73(5 Suppl 1):S4–S7.
1. Saunte DM, Boer J, Stratigos A, Szepietowski JC, Hamzavi I, Kim KH, et al. Diagnostic delay in hidradenitis suppurativa is a global problem. Br J Dermatol. 2015;173:1546–1549.
1. Koumaki D, Efthymiou O, Bozi E, Katoulis AC. Perspectives on perceived stigma and self‐stigma in patients with hidradenitis suppurativa. Clin Cosmet Investig Dermatol. 2019;12:785–790.
1. Senthilnathan A, Kolli SS, Cardwell LA, Richardson IM, Feldman SR, Pichardo RO. Even mild hidradenitis suppurativa impairs quality of life. Br J Dermatol. 2019;181:838–839.
1. Sampogna F, Fania L, Mazzanti C, Pallotta S, Panebianco A, Mastroeni S, et al. The impact of hidradenitis suppurativa on general health is higher than that of hypertension, congestive heart failure, type 2 diabetes, myocardial infarction and depression. J Eur Acad Dermatol Venereol. 2020;34:e386–e388.

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Stigmatization and perceived health status in patients with hidradenitis suppurativa: an observational multicenter study in Europe

Affiliations

Stigmatization and perceived health status in patients with hidradenitis suppurativa: an observational multicenter study in Europe

Authors

Affiliations

Abstract

References

Publication types

MeSH terms

LinkOut - more resources

Full Text Sources

Medical

Research Materials