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.

The authors have declared no competing interest.

This project was supported by Institut National de la Sante et de la Recherche Medicale (INSERM - amorcage recherche participative program) and the EndoFrance patient organisation. D.L.Q. is supported by a doctoral fellowship from the Fondation pour la Recherche Medicale as part of the ECO-Contrat doctoral program (Grant number: ECO202406019168).

I confirm all relevant ethical guidelines have been followed, and any necessary IRB and/or ethics committee approvals have been obtained.

Yes

The details of the IRB/oversight body that provided approval or exemption for the research described are given below:

The study received ethics approval from the Hospices Civils de Lyon ethics committee, and personal data were handled in conformity with the general data protection regulation. All participants, patients and professionals, gave their consent to participation and audiorecording of the interviews.

I confirm that all necessary patient/participant consent has been obtained and the appropriate institutional forms have been archived, and that any patient/participant/sample identifiers included were not known to anyone (e.g., hospital staff, patients or participants themselves) outside the research group so cannot be used to identify individuals.

Yes

I understand that all clinical trials and any other prospective interventional studies must be registered with an ICMJE-approved registry, such as ClinicalTrials.gov. I confirm that any such study reported in the manuscript has been registered and the trial registration ID is provided (note: if posting a prospective study registered retrospectively, please provide a statement in the trial ID field explaining why the study was not registered in advance).

Yes

I have followed all appropriate research reporting guidelines, such as any relevant EQUATOR Network research reporting checklist(s) and other pertinent material, if applicable.

Yes

All data produced in the present study are available upon reasonable request to the authors