Exploring the nutrition-related healthcare experiences of individuals with endometriosis: qualitative interviews with consumers and dietitians

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Objective : To explore the nutrition-related healthcare experiences of individuals with endometriosis from both dietitian and consumer perspectives. Design: Qualitative individual semi-structured interviews. Setting : Online. Population or Sample : Individuals with endometriosis (≥18 years of age) (n=15) and dietitians (n=9) providing endometriosis care. Methods : One-on-one interviews with dietitians and individuals with endometriosis were conducted between March and June, 2024. Interview protocols were developed using the Theoretical Domains Framework and explored topics including self-directed diet modifications, access and referrals to dietitians, and confidence and competence in managing endometriosis with diet. The Framework Method was used for data analysis. Main outcome measures : The nutrition-related experiences of individuals with endometriosis and dietitians providing endometriosis care. Results: Four themes were generated including: [1] Need for individualised care, [2] Demand for healthcare system changes, [3] Importance of trusted voices for both individuals with endometriosis and practitioners, and [4] Demand for further disease research. Several sub-themes within these themes were also identified covering topics such as self-advocacy, financial burdens limiting accesses to nutrition care, the need for earlier dietary intervention of individuals with endometriosis, a lack of professional recognition for dietitians in the management of endometriosis, and the need for improved dietitian competence and confidence in providing endometriosis care. Conclusions: Individualised nutrition intervention is essential to endometriosis management. Earlier dietetic management, increased access to credible nutrition information sources for consumers, and enhanced confidence via increased clinical support for dietitians are essential for improving the long-term management of endometriosis. Funding : None to declare.

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