Understanding diagnostic delay for endometriosis:a scoping review using the social ecological framework

Diagnostic delay for endometriosis is a well-established phenomenon. Despite this, little is known about where in the health care system these delays occur or why they occur. Our review is the first attempt to synthesise and analyze this international evidence. A systematic scoping review with a pre-specified protocol incorporated researchers’ literature on diagnostic delay for endometriosis using the social-ecological theoretical framework. Four databases (PubMed, MEDLINE, EMBASE, PsychINFO) were searched from inception to September 2023. The search yielded 403 studies, 23 of which met the inclusion criteria. Most were from high-income countries. The average diagnostic delay reported across studies was 6.8 years (range 1.5 to 11.4 years) but this masked the very wide differences reported between countries such as a 0.5-year delay in Brazil and Italy to a 35-year delay in Italy. Considering the impact on individuals and the health system, addressing diagnostic delay for endometriosis must remain a priority for researchers, health care providers and policy makers. More research is needed in low- and middle-income countries. Improving education about endometriosis, tracking outcomes through medical records and developing non-invasive diagnostic tools will be crucial to improve women’s health.