A qualitative interview study exploring patients' views and experiences of treatment for hidradenitis suppurativa in the UK.

Mar 20, 2025The British journal of dermatology

Patients' experiences and opinions about hidradenitis suppurativa treatment in the UK

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Abstract

Interviews with 35 participants revealed that personal experiences significantly shape patients' beliefs about treatment options for hidradenitis suppurativa.

Patients' previous experiences and knowledge influence their perceptions of treatment appropriateness.
Healthcare professional recommendations can affect patients' treatment choices.
Positive experiences were reported across various treatment types.
Negative experiences included side effects, lack of effectiveness, delays in procedures, and challenges with wound care.
Participants often felt that treatments that did not work for them could still benefit others, highlighting the need for personalized care.

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BACKGROUND: Hidradenitis suppurativa (HS) is a long-term skin condition where evidence for management after first-line treatment fails is limited and practice varies across the UK. Medical and surgical treatment options are potential avenues of treatment. Furthermore, patient perspectives on HS treatments have received little attention in research to date.

OBJECTIVES: To explore patients' views and experiences of treatment for HS to inform clinical care.

METHODS: We conducted a nested qualitative study within a prospective cohort study. Interviews with 35 participants were completed by telephone. Purposive sampling was undertaken. Framework analysis was used to develop themes.

RESULTS: Past experiences and knowledge informed patient beliefs and whether an individual felt a treatment option was appropriate or a good 'fit' for them at a specific moment in time. Healthcare professional recommendations can influence a patient's views and which treatment option they ultimately receive. Positive experiences were reported across all treatment types covered in the study. Negative experiences included mediation side-effects, lack of efficacy, delays to procedures and burden of wound care. However, even when personal experiences were not wholly positive for an individual, participants often believed the same treatment may potentially help others with HS, owing to the importance placed on personalization of treatment.

CONCLUSIONS: This paper has implications for how healthcare professionals discuss treatment options with people with HS. A 'one-size-fits-all' approach is inappropriate, and shared decision-making that elicits patients' beliefs and preferences is crucial.

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