Lack of socio-demographic participant diversity in endometriosis evidence risks unrepresentative clinical guidance: a structured review of a NICE guideline

Introduction Endometriosis is a long-term condition affecting up to 10% of people assigned female at birth.1 Those affected can experience significant psychosocial and economic burdens.2,3 Diagnosis can be challenging: patients typically present to primary care with undifferentiated heterogeneous symptoms. Initial differential diagnoses to consider encompass a broad range of both gynaecological and non-gynaecological (for example, bladder or bowel) conditions that might warrant investigation. Primary care is often cited as a bottleneck in the diagnostic pathway for patients with endometriosis. However, this fails to recognise the complexity of patient needs in primary care and the lack of specific clinical evidence and guidance from and for this setting. It also fails to recognise the complex processes of referrals to secondary care, including advice and guidance services, and referral triage.4 The ‘gold standard’ diagnostic test for endometriosis has been laparoscopy.5 Diagnosis necessitates referral to secondary care for assessment, potentially followed by an empirical trial of medical therapy before, or in parallel with, referral for specialist tests, such as MRI or laparoscopy, culminating in long and sometimes fraught patient journeys.6 Patients referred to secondary care likely have an inherently raised pre-test probability of endometriosis, and may not reflect the undifferentiated patient population presenting to primary care with possible endometriosis symptoms such as dysmenorrhoea or pelvic pain. Following laparoscopy, patients diagnosed with endometriosis are often discharged back to primary care. Of these, 75% require subsequent re-referral(s) from general practice back to secondary care for further specialist input and guidance on ongoing management.7 There are no NHS care pathways for endometriosis pre- and post-diagnosis and between primary and secondary care, despite its recognition as a chronic condition requiring longitudinal care, as recently highlighted as a recommendation in the National Confidential Enquiry into Patient Outcome and Death (NCEPOD) report on … RCGP login Members, please Login at RCGP to access the journal online Subscriber login Enter your BJGP login information below. Log in using your username and password Log in through your institution Pay Per Article - You may access this article (from the computer you are currently using) for 1 day for US$35.00 Regain Access - You can regain access to a recent Pay per Article purchase if your access period has not yet expired.