Experiences towards hormonal treatments: a qualitative study among endometriosis patients and healthcare professionals

Domitille Le Quere, Manon Verroul, Agathe Thierry, Mathilde Bouvard, Emma Brault-Galland, Gil Dubernard, Charles‐André Philip, Julie Haesebaert, Axelle Brulport
In: medRxiv · 2026 · doi:10.64898/2026.03.31.26349847 · W7147694802
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⚙ AI-generated summary by claude@2026-06, 2026-06-06 ⓘ

This qualitative study explored patient and healthcare professional perceptions of hormonal treatments for endometriosis, finding discrepancies in efficacy expectations and highlighting communication issues and differing sources of mental burden.

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⚙ AI-generated deep summary by claude@2026-06, 2026-06-06 ⓘ

This qualitative study used semi-structured focus groups with 20 endometriosis patients and 13 healthcare professionals in university hospitals and an academic research center to examine perceptions of hormonal treatment options, including beliefs about effectiveness, emotional experiences, and impacts on patient–professional and patient–environment relationships. The authors found a discrepancy between groups: healthcare professionals prioritized long-term amenorrhea, whereas patients emphasized immediate pain reduction, alongside reports of patients experiencing a lack of listening and empathy, shared-information deficits about options and side effects, and a desire to involve partners and family. The study also described mental burden for both patients and professionals, attributed to resource-intensive endometriosis management for professionals and patients’ need to actively compensate for insufficient physician information. This paper is centrally about endometriosis — it specifically investigates patient and clinician perceptions of hormonal treatment effectiveness and communication in endometriosis care.

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Abstract

Abstract Objective To investigate, in the context of endometriosis management, the perceptions of patients and healthcare professionals regarding hormonal treatment options. Design Qualitative study using semi-structured focus group methodology. Setting University hospitals and academic research center. Subject(s) Patients with endometriosis (n=20) and healthcare professionals (n=13) involved in their care. Intervention(s) Not applicable Main Outcome Measure(s) Focus group topics investigated representations on the concept of treatment effectiveness, emotion associated to this medical management and the perceived impact of these therapies on patient-professional and patient-environment relationship. Result(s) We highlighted a discrepancy between patients and doctors regarding the concept of efficacy of hormonal therapies. Long-term amenorrhea is the main priority for healthcare professionals, whereas pain reduction remains the immediate wait for patients. Interviewed patients reported a lack of listening and empathy, a shared-information deficit as regards treatment options and side-effects and a need to involved partner and family in care. These factors contribute to communication issues between patients and doctors and appear to contribute to significant mental burden on both sides. Among healthcare professionals, mental burden appears to arise primarily from the resource-intensive demands of endometriosis management, whereas among patients it is driven more by the need to take an active role in their own care to compensate for insufficient information provided by physicians. Conclusion In this study, we highlighted the ambiguities surrounding the concept of therapeutic efficacy of hormonal therapies and collected several factors to try to improve shared-decision-making process in the management of endometriosis. This is designed to help us create a shared decision-making tool in the near future.

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Condition tags

endometriosis

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Papers in the corpus that this work cites (lower rings, blue) and that cite this one (upper rings, green). Dot size scales with the paper's in-corpus citation count — bigger dot = more influential within the endo/adeno field. Click a dot to open that paper. [ expand to 2 hops ] — adds papers reached through this work's immediate citers/citees. Heavier; up to 60 extra dots.

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