Dwyer Sharnie, Mitchell Lana J, Moran Lisa, Vincze Lisa
School of Health Sciences and Social Work, Griffith University, Gold Coast, Queensland, Australia.
Monash Centre for Health Research and Implementation, Faculty of Medicine, Nursing and Health Sciences, Monash University, Clayton, Victoria, Australia.
J Hum Nutr Diet. 2025 Aug;38(4):e70097. doi: 10.1111/jhn.70097.
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.
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.
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.
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.
子宫内膜异位症是一种慢性且无法治愈的炎症性疾病。传统上，症状管理涉及医学和手术干预；然而，饮食调整越来越受欢迎。虽然饮食干预对症状管理有效性的证据正在出现，但对于消费者和营养师与营养相关的医疗保健经历却知之甚少。本研究旨在从营养师和消费者的角度探索子宫内膜异位症患者与营养相关的医疗保健经历。
2024年3月至6月期间，在线对营养师（n = 9）和18岁及以上的子宫内膜异位症患者（n = 15）进行了一对一的半结构化访谈。访谈方案采用理论领域框架制定，探讨的主题包括自我指导的饮食调整、营养师的获取和转诊，以及通过饮食管理子宫内膜异位症的信心。采用框架法进行数据分析。
产生了四个主题，包括：[1]个性化护理的需求，[2]医疗保健系统变革的需求，[3]子宫内膜异位症患者和从业者信任声音的重要性，以及[4]进一步疾病研究的需求。确定的子主题包括自我倡导、经济负担、营养护理获取有限、早期饮食干预的需求、子宫内膜异位症管理中营养师缺乏转诊途径，以及为提供子宫内膜异位症护理的营养师改善临床支持获取的需求。
尽管有消费者需求，但子宫内膜异位症患者仍然缺乏对适当营养支持的认识和获取途径。需要进行系统变革，包括明确的转诊途径、获取可靠的营养信息来源和临床支持，以加强对子宫内膜异位症患者的症状管理。
