Evaluation of endometriosis patients' expectations of a therapeutic patient education program and comparison with practitioners' perception

ObjectiveEndometriosis significantly affects patients' quality of life, yet its management remains challenging due to diagnostic delays and symptom complexity. Therapeutic patient education (TPE) is effective in chronic disease management, but guidelines are lacking for its application in endometriosis care. The primary aim of this study was to identify patient expectations to adapt endometriosis-specific TPE programs. The secondary aim was to compare these expectations with those perceived by these healthcare professionals.MethodsAnonymous online surveys sent to patients and healthcare professionals involved in endometriosis care explored preferences regarding session content and organization.ResultsParticipants were on average 34.4 years of age (+/- 8.9 years), with a mean delay in diagnosis of 9.2 years (+/- 7.9 years). Most patients (87.8%) would prefer TPE immediately after diagnosis, prioritizing symptom management and quality-of-life improvement, even without a proof of diagnosis for 131 patients (86.8%). No significant difference for patients' expectations was found according to their management satisfaction or their previous participation in TPE sessions. Partner involvement was desired by 69.9% of patients. Healthcare professionals shared priority themes and objectives with patients, but some discordances existed about infertility sessions, psychological support, and sexologists' participation.ConclusionPatients with endometriosis strongly support personalized TPE programs from diagnosis onward. Comparison between patients' expectations and professionals' point of view highlights the legitimacy of healthcare professionals involved in endometriosis management to set up TPE programs but the need for flexible and tailored sessions. This study paves the way for the structured, evidence-based development of TPE sessions for patients with endometriosis.