Understanding diagnostic delay for endometriosis: a scoping review

Abstract

AbstractIntroductionDiagnostic 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 analyse this evidence.MethodsA systematic scoping review with a pre-specified protocol was used to incorporate the global mixed methods literature on diagnostic delay for endometriosis. Four databases (PubMed, MEDLINE, EMBASE, PsychINFO) were searched from inception to September 2023 with a search strategy designed specifically for each.ResultsThe search yielded 367 studies, 22 of which met the inclusion criteria. A third of studies has been published since 2020 and 65% were from high income countries. Six were qualitative and 16 were quantitative studies. The average age of onset of endometriosis was 14 years for adolescents and 20 for adults. On average, the diagnostic delay reported for endometriosis across the included studies was 6.6 years (range 1.5 to 11.3 years) but this masked the very wide differences reported between countries such as a 0.5-year delay in Brazil to a 27-year delay in the UK.DiscussionHealth system barriers included access to private healthcare for those with limited finance, physical access for those using public health systems and a general lack of knowledge amongst patients and health care professionals. Women often reported feeling unheard by health professionals. 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.What is already known on this topicEndometriosis is currently difficult to diagnose. This results in delays in diagnosis which negatively impacts those suffering and increases the severity of pain and extent of the disease with increased costs to health systems.What this study addsThe scoping review methodology included studies using a range of methods. The longest average delay occurs in secondary care. Those seeking public health care experienced longer average delay in diagnosis compared to those seeking private health care. Improved clinical guidelines may reduce diagnostic delay.How this study might affect research, practice or policyThis is the first known review to explore diagnostic delay for endometriosis and provides an overview of the current literature. Clearer definitions of diagnostic delay for endometriosis are needed to aid in comparisons across countries. Improving education, tracking outcomes through medical records and developing non-invasive diagnostic tools will be crucial to improve women’s health.