[Evaluation of the expectations of patients with endometriosis regarding the EndOccitanie care network]

OBJECTIVE: The management of patients with endometriosis remains marked by a long, fragmented, and poorly coordinated care pathway, leading to significant diagnostic delay. In this context, the regional EndOccitanie network is being developed to improve the organization and quality of care. The aim of this study was to identify the expectations of patients regarding this network. METHODS: We conducted a descriptive epidemiological study using an online questionnaire administered through the LimeSurvey platform and distributed via the patient associations EndoFrance, Endomind, and the EndOccitanie network. Participants, all diagnosed with endometriosis, evaluated various aspects of their care pathway using a Likert scale. RESULTS: The results highlight several priority expectations: access to clear and reliable information, the implementation of a coordinated and accessible care pathway, and a comprehensive approach to the disease, including pain management, sexuality, and fertility. CONCLUSION: These findings underscore the need to further strengthen the structuring of the EndOccitanie network in order to improve the accessibility, continuity, and quality of care. A future reassessment will help measure the impact of the actions implemented.