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

Servando E Marron; Tamara Gracia-Cazaña; Francesca Sampogna; Christina Schut; Joerg Kupfer; Florence J Dalgard; Anthony Bewley; Sylvia van Beugen; Uwe Gieler; Lars Lien; Sonja Ständer; Nienke Vulink; Andrew Y Finlay; Franz J Legat; Geraldine Titeca; Gregor B Jemec; Laurent Misery; Csanad Szabo; Vesna Grivcheva-Panovska; Saskia Spillekom-van Koulil; Flora Balieva; Jacek C Szepietowski; Adam Reich; Bárbara Roque Ferreira; Andrey Lvov; Dmitry Romanov; Ake Svensson; Ilknur K Altunay; Andrew R Thompson; Claudia Zeidler; Lucía Tomas-Aragones; ESDAP Study Collaborators

doi:10.1111/ijd.17569

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

Int J Dermatol. 2024 Nov 11. doi: 10.1111/ijd.17569. Online ahead of print.

Authors

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

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.