Exploring the Nutrition-Related Healthcare Experiences of Individuals With Endometriosis: Qualitative Interviews With Consumers and Dietitians.

Abstract

INTRODUCTION: Endometriosis is a chronic and incurable inflammatory disease. Traditionally, symptom management involves medical and surgical intervention; however, dietary modification has grown in popularity. While evidence for the effectiveness of dietary interventions for symptom management is emerging, little is known about the nutrition-related healthcare experiences of both consumers and dietitians. This study aimed to explore the nutrition-related healthcare experiences of individuals with endometriosis from both dietitian and consumer perspectives. METHODS: One-on-one, semi-structured interviews with dietitians (n = 9) and individuals with endometriosis aged 18 years or older (n = 15) were conducted online 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 in managing endometriosis with diet. The Framework Method was used for data analysis. 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. Sub-themes identified included self-advocacy, financial burdens, limited accesses to nutrition care, the need for earlier dietary intervention, lacking referral pathways for dietitians in the management of endometriosis, and the need for improved access to clinical support for dietitians providing endometriosis care. CONCLUSIONS: Despite consumer demand there remains a lack of recognition and access to appropriate nutrition support for individuals with endometriosis. Systems changes including clear referral pathways, access to credible nutrition information sources and clinical support are needed to enhance symptom management for individuals with endometriosis.