Understanding and improving endometriosis experiences: a qualitative study into patient and healthcare professionals' experiences of management, diagnosis and treatment

RESEARCH QUESTION

What can we learn from UK patient and healthcare professional experiences of endometriosis care to improve care journeys? BACKGROUND

Endometriosis is a long-term condition, involving the abnormal presence of endometrial tissue outside of the uterus, with prevalence estimates around 10% of women but likely higher. It is associated with symptoms such as pelvic pain and fertility problems, and detrimental impacts on quality of life.

NHS endometriosis patients have voiced their poor care experiences, including via the recent Women’s Health Strategy for England. The average length of time between first seeing a healthcare professional about symptoms and getting a diagnosis is 8-years.

Efforts to raise awareness amongst GPs have sought to improve patients' experiences; yet many continue to report poor care journeys. More research is needed to better understand a wide range of patient experiences and healthcare professionals’ perspectives to find other improvements that can be made.

AIMS AND OBJECTIVES

Our aim is to build a comprehensive understanding of UK patients’ experiences of endometriosis healthcare, integrated with understandings from professionals in primary care and specialist services, to identify opportunities to use this learning for improvements in care journeys.

Our objectives are to: (1) Build on what is already known about patient and healthcare professional perspectives and experiences of endometriosis; (2) Explore diverse experiences of patients in the UK with endometriosis; (3) Explore the experiences and perspectives of healthcare professionals involved in endometriosis care; (4) Develop a comprehensive and integrated whole-system understanding of endometriosis healthcare journeys and experiences, and use the findings to develop resources for patients and healthcare professionals.

METHODS

We will interview up to 50 patients about what it has been like to have diagnosed or suspected endometriosis, see healthcare professionals, and experience treatments and diagnosis. We will hear from patients with different experiences, including from racially minoritised groups, with disability, and across class backgrounds.

We will also interview up to 30 specialist healthcare professionals and 10 non-GP primary care practitioners, and re-analyse interviews we collected with 42 GPs.

We will explore similarities and differences in what patients and healthcare professionals say, and look for examples of both good and poor healthcare as well as points where there is mismatch between patients and healthcare professionals. TIMELINES FOR DELIVERY The study will run from September 2024 for 30 months.

ANTICIPATED IMPACT AND DISSEMINATION

The learning in our study will be used to support patients, inform healthcare professionals, and shape health services to improve care journeys.

Our findings will be published as a new information and support resource on Health Experiences Insights (HEXI), a platform hosted by the University of Oxford. The resource will summarise key findings with excerpts from patient interviews.

We will co-design a short film to use at a workshop with patients, healthcare professionals, and policy-makers, to work out what other resources we can develop from the study. The film will then be available online for others to use to improve healthcare services. We will publish our findings in high-quality journals, and present them at conferences.