Emotional and social burden of hidradenitis suppurativa: a qualitative multi-centre narrative medicine project in Italy

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.