Identifying Unmet Care Needs and Important Treatment Attributes in the Management of Hidradenitis Suppurativa: A Qualitative Interview Study

Damon Willems*, Mickael Hiligsmann, Hessel H. van der Zee, Christopher J. Sayed, Silvia M. A. A. Evers

*Corresponding author for this work

Research output: Contribution to journalArticleAcademicpeer-review

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Background and Objective Hidradenitis suppurativa (HS) is an inflammatory skin disease with a profound effect on patients' quality of life. The patient's journey to manage HS is often complex and unsuccessful, which motivates the aim of this research to gain insight into unmet needs and relevant treatment considerations from the perspective of patients and healthcare professionals (HCPs). Methods Individual semi-structured interviews were conducted with patients and HCPs experienced in treating HS to understand the perceived unmet care needs and to identify important treatment attributes. Prioritization of the five most important treatment attributes allowed elicitation of their relative importance. Results Interviews with 12 patients and 16 HCPs revealed 16 areas of unmet needs either related to treatment outcomes or the care process and 13 important treatment attributes. The most frequently reported unmet needs by patients and HCPs were lacking quality-of-life improvement, low treatment effectiveness, inadequate pain control, low disease awareness, and delayed diagnosis. Patients expressed unique concerns relating to pain management, access to HS specialists, and wound care guidance and costs, which HCPs did not. Treatment attributes related to effectiveness were considered most important by patients and HCPs. Patients additionally emphasized a strong preference for improved pain management. Conclusions Current HS treatments and care processes leave patients and HCPs with a high level of unmet need. It is critical to consider patients' and HCPs' perspectives when designing appropriate HS care as perceived unmet needs differ. Further quantitative preference elicitation studies are needed to assess the trade-offs between important care needs and treatment attributes.

Original languageEnglish
Pages (from-to)207-218
Number of pages12
JournalThe Patient: patient-centered outcomes research
Issue number2
Early online date9 Aug 2021
Publication statusPublished - Mar 2022



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