Title: A Realist evaluation of the implementation of a women-centred NHS endometriosis website and tools to support more timely diagnosis and shared decision making with general practitioners
Funder: Health and Care Research Wales (Welsh Government)

Abstract: Purpose of the project Endometriosis affects 1 in 10 women (and people assigned female at birth) (REF 1). It causes severe symptoms with a profound life-long impact. It takes a long time to diagnose. The NHS Wales Endometriosis.Cymru website has a Symptom Reporting Tool that helps people monitor their symptoms and create a Symptom Report they can use to talk with their GP about their symptoms. The website is being used by the public and Specialist Endometriosis Nurses. However, symptom tools do not always work as intended and we need to understand why to improve their use in general practice for earlier diagnosis. The results will help the government achieve its wellbeing objective “effective, high quality and sustainable healthcare” for all. Approach taken All our work is done with stakeholders and public and patient involvement (PPI) including this proposal. We will do a ‘realist review’ to analyse all the evidence we can find about symptom-reporting in endometriosis and a ‘realist evaluation’ interviewing people who use the Symptom Reporting Tool: 28 patients, 7 General Practitioners and 7 Specialist Endometriosis Nurses. We will also create three case studies through observation and follow interviewed patients for 12 months to understand their view of what happens to them after using the Tool with their doctor. All these verbal data will be analysed to develop a clearer picture of when, why, and how the Symptom Reporting Tool works in GP practice to help with earlier diagnosis. Expected outcomes We will help the government achieve its wellbeing objective through: 1) Training a researcher from the third sector 2) 2 articles and 2 conference submissions 3) Opportunities for further research and implementation of tools 4) A set of practice considerations for patients and GPs 4) Patient experiences data to enhance existing GP training 6) Valuable information for the NHS Wales Endometriosis.cymru developers

Lay abstract: Purpose of the project Endometriosis affects 1 in 10 women (and people assigned female at birth) (REF 1). It causes severe symptoms with a profound life-long impact. It takes a long time to diagnose. The NHS Wales Endometriosis.Cymru website has a Symptom Reporting Tool that helps people monitor their symptoms and create a Symptom Report they can use to talk with their GP about their symptoms. The website is being used by the public and Specialist Endometriosis Nurses. However, symptom tools do not always work as intended and we need to understand why to improve their use in general practice for earlier diagnosis. The results will help the government achieve its wellbeing objective “effective, high quality and sustainable healthcare” for all. Approach taken All our work is done with stakeholders and public and patient involvement (PPI) including this proposal. We will do a ‘realist review’ to analyse all the evidence we can find about symptom-reporting in endometriosis and a ‘realist evaluation’ interviewing people who use the Symptom Reporting Tool: 28 patients, 7 General Practitioners and 7 Specialist Endometriosis Nurses. We will also create three case studies through observation and follow interviewed patients for 12 months to understand their view of what happens to them after using the Tool with their doctor. All these verbal data will be analysed to develop a clearer picture of when, why, and how the Symptom Reporting Tool works in GP practice to help with earlier diagnosis. Expected outcomes We will help the government achieve its wellbeing objective through: 1) Training a researcher from the third sector 2) 2 articles and 2 conference submissions 3) Opportunities for further research and implementation of tools 4) A set of practice considerations for patients and GPs 4) Patient experiences data to enhance existing GP training 6) Valuable information for the NHS Wales Endometriosis.cymru developers

Research activity codes: 7.1 INDIVIDUAL CARE NEEDS;8.1 ORGANISATION AND DELIVERY OF SERVICES
Health categories: REPRODUCTIVE HEALTH AND CHILDBIRTH