Experiences of drainage and associated impacts: A qualitative study among patients with hidradenitis suppurativa

Thestrup Hansen, Stine, Villumsen, Bente, Khaled, Mina Shereen, Shih, Terri, Daveluy, Steven, Garg, Amit, de Goeij, Susanne, McGrath, Barry M., Theut Riis, Peter, Zalik, Kari, Hsiao, Jennifer L., Frederiksen, Camilla G., Goandal, Noor F., Ring, Hans Christian, Dowsett, Joseph, Masson, Rahul, Ingram, John R. ORCID: https://orcid.org/0000-0002-5257-1142, Jemec, Gregor B. E., Kirby, Joslyn S. and Thorlacius, Linnea 2026. Experiences of drainage and associated impacts: A qualitative study among patients with hidradenitis suppurativa. JEADV Clinical Practice 10.1002/jvc2.70274

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Abstract

Hidradenitis suppurativa (HS) is a chronic, debilitating inflammatory skin condition often accompanied by malodorous drainage. Drainage affects quality of life, contributing to stigma, emotional distress, and physical challenges. Recognising the role of drainage in HS, the HiSTORIC (Hidradenitis SuppuraTiva cORe outcomes set International Collaboration) initiative identified it as a key symptom in clinical trials and developed the The HIdradenitis suppurativa DrainagE (HIDE) Scale. Objectives This study aimed to explore patients' experiences of drainage to guide person-centred care approaches. Methods A qualitative secondary analysis was conducted using data from the parent study on The HIDE Scale©️. The data included 38 interviews with patients aged ≥ 18 years, diagnosed with HS, and experiencing drainage. Reflexive thematic analysis was applied using an inductive and semantic approach, guided by person-centred theoretical perspectives. Results Three overarching themes emerged: (1) Drainage is difficult to explain due to its unpredictable and complex nature; (2) Drainage impacts mental well-being, contributing to feelings of social stigma, frustration, and emotional distress; and (3) Drainage involves significant physical difficulties, including malodour, frequent dressing changes, and daily activity disruption. Patients described drainage by volume, consistency, colour, and location, emphasising its multidimensional impact. Despite these challenges, pain was identified as the most debilitating symptom of HS. Conclusions This study highlights the physical, psychological, and social impact of drainage in HS, emphasising its complexity and unpredictability. Patients described drainage as a multifaceted experience that profoundly affects their quality of life. To improve care, healthcare providers should integrate an assessment of drainage into clinical practice, utilising standardised tools like The HIDE Scale©️. Addressing physical and psychosocial aspects of drainage through open and empathetic discussions can reduce stigma, foster a sense of support, and enhance patient–clinician relationships. Adopting person-centred approaches validates patients' experiences and holistic assessment is essential for improving care strategies and the well-being of individuals living with HS.

Item Type:	Article
Date Type:	Published Online
Status:	In Press
Schools:	Schools > Medicine
Publisher:	Wiley
ISSN:	2768-6566
Date of First Compliant Deposit:	25 January 2026
Date of Acceptance:	14 January 2026
Last Modified:	26 Jan 2026 10:15
URI:	https://orca.cardiff.ac.uk/id/eprint/184157

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