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

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.