Emotional and social burden of hidradenitis suppurativa: a qualitative multi-centre narrative medicine project in Italy
12 affiliations
- 1U.O.C. Dermatology “Daniele Innocenzi”, Department of Medical-Surgical Sciences and Biotechnologies, Faculty of Pharmacy and Medicine, Polo Pontino Campus, Sapienza University Rome, Rome, Italy
- 22 A.O.U. of Modena, Surgical, Medical and Dental Department of Morphological Sciences Related to Transplant, Oncology, and Regenerative Medicine, University of Modena and Reggio Emilia, Modena, Emilia-Romagna, Italy
- 3S.O.D. Dermatology, A.O.U. of Marche, Ancona, Italy
- 4Passion People APS, Cagliari, Italy
- 5Division of Dermatology, Hidradenitis Suppurativa Outpatient Service, APSS - Trento Hospital, Trento, Italy
- 6Department of Clinical Dermatology, San Gallicano Dermatological Institute IRCCS, Rome, Lazio, Italy
- 7San Lazzaro Dermatological Hospital, A.O.U. City of Health and Science University Hospital of Turin, Turin, Piedmont, Italy
- 8UOC Dermatology, University of Parma, Parma, Emilia-Romagna, Italy
- 9Section of Dermatology and Infectious Disease, Department of Medical Sciences, University of Ferrara, Ferrara, Emilia-Romagna, Italy
- 10Novartis Farma S.p.A, Milan, Lombardy, Italy
- 11Healthcare Area, ISTUD Srl, Milan, Lombardy, Italy
- 12Healthcare Area, ISTUD Srl, Milan, Greco, Italy
Abstract
Introduction: Hidradenitis suppurativa (HS) is an inflammatory skin disease with a profound impact on quality of life (QoL). Despite increasing awareness, diagnostic delays and social stigma remain crucial challenges. Against this backdrop, narrative medicine (NM) complements quantitative and clinical data by capturing the lived experience of a condition. This NM project aimed to explore the emotional and social burden of HS, coping strategies and care pathways from the perspectives of patients, caregivers and dermatologists.
Methods: Conducted between September and December 2024 in eight Italian HS expert centres, the project involved adult patients with HS, their caregivers and treating dermatologists. Participants were invited to complete validated QoL questionnaires and write anonymous narratives through illness plots or metaphors (ie, the body as a house). Dermatologists used parallel charts to share insights on care relationships. Narratives were analysed using MAXQDA (version 24; VERBI Software GmbH, Berlin, Germany)and NM classifications.
Results: 59 patients, 12 caregivers and 10 dermatologists participated. Illness dimensions predominated in patient narratives (49%), and sickness aspects were most frequent among dermatologists (54%). Patients reported a mean diagnostic delay of 10 years, frequent work and social impairment and a significant emotional burden, including stigma, shame and fear of judgement. Coping resources included supportive relationships, trust in healthcare professionals, empowerment initiatives and peer networks. Caregivers described emotional vulnerability and high daily care demands. Dermatologists highlighted organisational gaps, lack of multidisciplinary protocols and frustration with late diagnoses. Across all groups, hopes centred on increased awareness, improved therapies and stronger care networks.
Conclusion: ”VISI: lives of hidradenitis suppurativa in Italy” is the first Italian NM project to jointly examine HS experiences of patients, caregivers and dermatologists. Findings underscore the heavy mental and social burden of HS and the need for integrated, patient-centred care models. NM revealed coping resources and relational factors that may enhance resilience, strengthen the therapeutic alliance and improve clinical outcomes.
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BibTeX
@article{skroza2026emotional,
title = {{Emotional and social burden of hidradenitis suppurativa: a qualitative multi-centre narrative medicine project in Italy}},
author = {Nevena Skroza and Cristina Magnoni and Elisa Molinelli and Giusi Pintori and Riccardo Balestri and Viviana Lora and Federica Repetto and Francesca Satolli and Natale Schettini and Arianna Tonelli and Alice Messi and Fabio Madau and Camilla Corradi and Erika Greco and Maria Giulia Marini},
journal = {BMJ Open},
year = {2026},
month = nov,
doi = {10.1136/bmjopen-2025-111830},
url = {https://bmjopen.bmj.com/lookup/doi/10.1136/bmjopen-2025-111830},
note = {CC BY-NC 4.0},
}
RIS
TY - JOUR
TI - Emotional and social burden of hidradenitis suppurativa: a qualitative multi-centre narrative medicine project in Italy
AU - Nevena Skroza
AU - Cristina Magnoni
AU - Elisa Molinelli
AU - Giusi Pintori
AU - Riccardo Balestri
AU - Viviana Lora
AU - Federica Repetto
AU - Francesca Satolli
AU - Natale Schettini
AU - Arianna Tonelli
AU - Alice Messi
AU - Fabio Madau
AU - Camilla Corradi
AU - Erika Greco
AU - Maria Giulia Marini
PY - 2026
DA - 2026/11/02
JO - BMJ Open
DO - 10.1136/bmjopen-2025-111830
UR - https://bmjopen.bmj.com/lookup/doi/10.1136/bmjopen-2025-111830
AB - Introduction: Hidradenitis suppurativa (HS) is an inflammatory skin disease with a profound impact on quality of life (QoL). Despite increasing awareness, diagnostic delays and social stigma remain crucial challenges. Against this backdrop, narrative medicine (NM) complements quantitative and clinical data by capturing the lived experience of a condition. This NM project aimed to explore the emotional and social burden of HS, coping strategies and care pathways from the perspectives of patients, caregivers and dermatologists. Methods: Conducted between September and December 2024 in eight Italian HS expert centres, the project involved adult patients with HS, their caregivers and treating dermatologists. Participants were invited to complete validated QoL questionnaires and write anonymous narratives through illness plots or metaphors (ie, the body as a house). Dermatologists used parallel charts to share insights on care relationships. Narratives were analysed using MAXQDA (version 24; VERBI Software GmbH, Berlin, Germany)and NM classifications. Results: 59 patients, 12 caregivers and 10 dermatologists participated. Illness dimensions predominated in patient narratives (49%), and sickness aspects were most frequent among dermatologists (54%). Patients reported a mean diagnostic delay of 10 years, frequent work and social impairment and a significant emotional burden, including stigma, shame and fear of judgement. Coping resources included supportive relationships, trust in healthcare professionals, empowerment initiatives and peer networks. Caregivers described emotional vulnerability and high daily care demands. Dermatologists highlighted organisational gaps, lack of multidisciplinary protocols and frustration with late diagnoses. Across all groups, hopes centred on increased awareness, improved therapies and stronger care networks. Conclusion: ”VISI: lives of hidradenitis suppurativa in Italy” is the first Italian NM project to jointly examine HS experiences of patients, caregivers and dermatologists. Findings underscore the heavy mental and social burden of HS and the need for integrated, patient-centred care models. NM revealed coping resources and relational factors that may enhance resilience, strengthen the therapeutic alliance and improve clinical outcomes.
SN - 2044-6055
SN - 2044-6055
ER -