Assessing healthcare needs in endometriosis: a scoping review

Women with endometriosis still have to seek the legitimacy of their disease from the medical community and often feel unheard. This scoping review aims to map the scientific literature to describe barriers and facilitators in the endometriosis management from both patients' and healthcare professionals' (HCPs') perspectives.

We searched the literature published between 2012 and 2023 in the Web of Science, PsychInfo, PubMed, CINAHL, Embase, and Cochrane Library databases. A total of 52 eligible studies were identified.

We observed several barriers in the endometriosis management: the perception of patients as challenging and psychosomatic; lack of awareness and medical knowledge; persistent taboos and biases; challenging communication about pain, pregnancy, and infertility; lack of empathy from HCPs; and barriers in diagnostic tools and healthcare accessibility. Key facilitators were HCPs and community awareness; taking patients' symptoms seriously; compassionate communication about fertility and pain; shared decision-making, encouraging patients to seek evidence-based information; and multidisciplinary support.

We were able to identify concrete barriers and facilitators to successful endometriosis management. Future research is now required to identify optimal ways to implement this evidence, and research the extent to which it applies to more diverse populations in non-Western setting, and to explore the impact of HCP demographic characteristics.