Unmet needs of Australians in endometriosis research: a qualitative study of research priorities, drivers and barriers to participation

Abstract

Abstract Background:Endometriosis causes significant personal and societal burden. Despite this, research funding lags behind other chronic conditions and therefore determining where to prioritise these limited funds is vital. Research priorities may differ between affected individuals and clinicians/researchers. The aim of this research project is to explore research priorities and determinants of endometriosis research from the perspective of people with endometriosis in Australia. Methods: Four focus groups involving 30 people with endometriosis were conducted and analysed using qualitative inductive content analysis. Results: Two categories were developed from the data: unmet research needs and motivators and barriers to participation in endometriosis research. Participants expressed interest in developing non-invasive diagnostic tools and a more multidisciplinary or holistic approach to treatment. Participants urgently wanted research on treatment options for symptom management, with many prioritising non-hormonal treatments including medicinal cannabis and complementary medicine. Others prioritised research on causes of endometriosis to assist with prevention and eventual cure of the disease over research on treatments. The main drivers for participating in endometriosis research were hope for symptom improvement and a reduction in time to diagnosis. Research design features that were important included the ability to easily access testing centres (e.g. for blood tests) and copies of test results, as were automated data collection reminders and easy data entry to record measurements. Research incentives for younger endometriosis patients and a broad dissemination of information about research projects was considered likely to increase participant numbers. Barriers included time commitments, a lack of flexibility around research appointments for data collection, travel or work commitments, concerns about the safety of some products, and trying to conceive. Conclusions: People with endometriosis were open to participating in research they felt aligned with their needs, with a significant focus on diagnostic tools and symptom relief. However, researchers must co-design approaches to ensure convenience and flexibility for research participation.