Experiences towards endometriosis management: A qualitative study among patients and healthcare professionals
Domitille Le Quéré1, Manon Verroul2, Agathe Thierry3
1LabTAU, INSERM, Centre Léon Bérard, Université Claude Bernard Lyon 1, Lyon, F-69003, France.
Objectives:
Endometriosis is a chronic disease for which no curative treatment currently exists. The available palliative treatments are not without side effects and must be tailored to the individual expectations and objectives of each patient. This poses significant challenges for clinician-patient communication. This study explores the perceptions of patients and healthcare professionals regarding endometriosis management to identify ways to improve shared decision-making processes.
Methods:
This cross-sectional qualitative study was performed using a semi-structured focus group methodology. Twenty patients with endometriosis and thirteen healthcare professionals were separately involved in this study between June 2024 and January 2025. Focus group topics investigated the representations of the concept of treatment effectiveness, the emotions associated with endometriosis management, and the perceived impact of care pathways on patient-clinician and patient-environment relationships.
Results:
The study highlighted contrasting perspectives between patients and clinicians regarding what constitutes effective hormonal therapies. Long-term amenorrhea is a priority for healthcare professionals, whereas pain reduction remains the immediate priority for patients. Patients also expect surgery to be as effective as possible and are enthusiastic about non-medical treatments. Patients who participated in the focus groups reported a lack of listening and empathy, a deficit of shared information as regards treatment options and side effects, and a need to involve partners and family members in care. These factors contribute to communication issues between patients and clinicians and contribute to substantial psychological burden on both sides.
Conclusion:
The study highlighted the central role of communication and analysed, at different levels, the factors underlying relational issues that affect patient care and quality of life. Several factors should be addressed to improve shared decision-making in the management of endometriosis, which may inform the development of a shared decision-making tool in the near future.
