id : NIHR156216

award_type : Research

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

award_amount : 589894.75

award_amount_disp : 589,894.78

app_abstract : 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 November 2023 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 Healthtalk.org, an award-winning platform accessed by 7 million visitors yearly and used for teaching in almost all UK medical schools. 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.

app_plain_english_summary : AIMS Our research aims to understand UK patients' experiences of endometriosis alongside the perspectives of healthcare professionals involved in their care. The learning will be used to support patients, inform healthcare professionals, and shape health services to improve care journeys. BACKGROUND Endometriosis is a long-term condition involving the presence of tissue resembling the lining of the womb outside of the womb. There can be different symptoms, including pelvic pain and fertility problems. It can have negative impacts on mental health, work, and relationships. Around 10% of women have endometriosis, but this figure could be even higher. For NHS patients, the usual route to diagnosis is to see a GP, referral to a specialist, and key-hole surgery. On average, the length of time between first seeing a healthcare professional about symptoms and getting a diagnosis is 8 years. This delay leaves some women feeling GPs do not know enough about endometriosis, and that they have been 'fobbed off'. Efforts to raise awareness amongst GPs have tried to improve patients' experiences; even so, many continue to report poor experiences. 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. DESIGN AND 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 a wide range of patients with different experiences, including from racially minoritised groups, with disability, and across class backgrounds. The interviews will take place in person, online or by phone. We will also interview up to 30 specialists, 10 practice nurses and clinical pharmacists, and re-analyse interviews already 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 care as well as points of mismatch between patient and healthcare professional accounts. PATIENT AND PUBLIC INVOLVEMENT Four women of different ages with lived experience of endometriosis helped design the study. They highlighted a range of important issues, including the often overlooked impact on peri- and post-menopausal women. Our planned PPI work includes: discussions at the outset to actively ask about the needs and priorities for those from marginalised backgrounds; establishing advisory groups to seek ongoing input on key decisions, milestones, and challenges; and co-design workshops focused on sharing study findings and resources widely. Those with lived experience will work closely with and advise us to ensure the study has ongoing commitment and accountability to improving endometriosis care for all. The co-applicant team also includes the heads of two relevant national charities (Emma Cox, Endometriosis UK; Neelam Heera-Shergill, Cysters) who will help undertake the PPI work. DISSEMINATION Our findings will be published as a new information and support endometriosis resource which will summarise key findings with excerpts from patient interviews (with permission). We will also make a short film to use at co-design workshops with patients, healthcare professionals, and policy-makers, to work out what other resources to develop from the study. We will publish our findings in high-quality journals, and present them at conferences.

hrcs_health_category : Renal and Urogenital,Reproductive Health and Childbirth

rac_code : 7.1 Individual care needs,7.3 Management and decision making

research_type : Primary Research

programme : Health and Social Care Delivery Research

funding_stream : HSDR Researcher Led

award_status : Contracted

programme_stream : Researcher Led

contracting_org : University of Oxford

centre : NETSCC

contracting_org_title : Contracting Organisation

start_date : 2024-07-01T23:59:59.000+0000

end_date : 2026-12-31T23:59:59.000+0000

lead_investigator_title : Chief Investigator

lead_investigator_name : Dr Abigail McNiven

lead_investigator_orcid : 0000-0001-5041-2095

co_investigator_name : Associate Professor Christian Becker,Associate Professor Katy Vincent,Dr Lisa Hinton,Dr Sharon Dixon

co_investigator_orcid : ,0000-0001-9249-2492,0000-0002-6082-3151,0000-0002-7469-6093

research_call : HSDR Researcher-led call (Aug 22 - Nov 22)

call_id : 22/117

award_website :

jl_rep_title : Journals Library Report

highlighting :

full_contracting_org : University of Oxford

full_co_investigator_name : Associate Professor Christian Becker,Associate Professor Katy Vincent,Dr Lisa Hinton,Dr Sharon Dixon

_version_ : 1780177603687088000

start_year : 2024

full_lead_investigator_name : Dr Abigail McNiven