{"paper_id":"05c6148a-d55b-4184-9528-643eb7790bff","body_text":"DOI: https:/ /doi.org/10.3399/bjgp24X737697 \n \nA lack of sociodemographic participant diversity in endometriosis evidence risks \nunrepresentative clinical guidance: a structured review of the evidence contributing to a NICE \nguideline \n \nBackground \nWomen who are black are less likely to be diagnosed with endometriosis than white women. \nThere is no confirmed biological basis, so this likely represents structural barriers around \nhealth care. There is a lack of evidence exploring the interface between ethnicity and \nsymptoms or experience of care and treatment. \nAim \nTo map recording of sociodemographic diversity in the evidence informing an endometriosis \nguideline. \nMethod \nInclusion of study setting, ethnicity, age, and socioeconomic status was documented within \nthe evidence cited in National Institute for Health and Care Excellence (NICE) NG73 (2017) \nEndometriosis diagnosis and management. Included were 44 studies with 43 sample groups \nfrom the chapters: ‘Signs and Symptoms’, ‘Information and Support’, and ‘Diagnosis’. Data \nwere extracted independently by two researchers. \nResults \nNo studies were conducted in primary care. The evidence cited in ‘Signs and Symptoms’ and \n‘Diagnosis’ was exclusively from tertiary care. ‘Information and Support’ included 9/16 \nstudies from tertiary care, and 7/16 recruited through community and advocacy networks. \nFor ethnicity, 4/44 studies formally reported participant ethnicity (three from ‘Information \nand Support’, one from ‘Diagnosis’). In these, 93%, 90%, 60%, and 75% of participants were \nwhite/Caucasian (mean 79.5%). For age, 3/44 studies included adolescents. Many studies \nexcluded women who were deemed outside reproductive age. For socioeconomic status, \neight studies, all from ‘Information and Support’, reported socioeconomic status in some \nform. The majority of participants were tertiary educated. \nConclusion \nThese results highlight the missing demographics within evidence cited in a national guideline \nfor endometriosis. These align with documented inequities in diagnosis of endometriosis and \nwarrant urgent attention. \n \nZara Khan, University of Edinburgh \nKaty Vincent, University of Oxford \nTanvi Rai, University of Oxford  \nSharon Dixon, University of Oxford  \n \nZara Khan, University of Edinburgh \nEmail: z.c.khan@sms.ed.ac.uk \n \nSubmission ID \n215","source_license":"public-domain-us","license_restricted":false}