{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,6,16]],"date-time":"2026-06-16T13:11:17Z","timestamp":1781615477242,"version":"3.54.5"},"reference-count":41,"publisher":"Oxford University Press (OUP)","issue":"8","license":[{"start":{"date-parts":[[2025,5,18]],"date-time":"2025-05-18T00:00:00Z","timestamp":1747526400000},"content-version":"vor","delay-in-days":0,"URL":"https:\/\/creativecommons.org\/licenses\/by-nc\/4.0\/"}],"content-domain":{"domain":[],"crossmark-restriction":false},"short-container-title":[],"published-print":{"date-parts":[[2025,8,1]]},"abstract":"<jats:title>Abstract<\/jats:title>\n               <jats:sec>\n                  <jats:title>STUDY QUESTION<\/jats:title>\n                  <jats:p>What is the validity of published administrative health data case definitions of polycystic ovary syndrome (PCOS) compared with reference standards?<\/jats:p>\n               <\/jats:sec>\n               <jats:sec>\n                  <jats:title>SUMMARY ANSWER<\/jats:title>\n                  <jats:p>Due to the limited number of eligible studies, drawing definitive conclusions is challenging; however, this review highlights significant gaps and variability in current PCOS case definitions, underscoring the need for standardized case definitions in future research.<\/jats:p>\n               <\/jats:sec>\n               <jats:sec>\n                  <jats:title>WHAT IS KNOWN ALREADY<\/jats:title>\n                  <jats:p>Administrative health data offer the opportunity to evaluate health outcomes and disease epidemiology at a population-level. Currently, the validity of existing administrative health data case definitions for PCOS is unknown.<\/jats:p>\n               <\/jats:sec>\n               <jats:sec>\n                  <jats:title>STUDY DESIGN, SIZE, DURATION<\/jats:title>\n                  <jats:p>A systematic review of the literature was conducted on full-text English-language articles up to July 2023, using the MEDLINE and EMBASE databases.<\/jats:p>\n               <\/jats:sec>\n               <jats:sec>\n                  <jats:title>PARTICIPANTS\/MATERIALS, SETTING, METHODS<\/jats:title>\n                  <jats:p>Two reviewers independently screened titles, abstracts and full texts, extracted data, assessed study quality and graded validity. A random effects meta-analysis was conducted to pool reported validity measures and heterogeneity was examined.<\/jats:p>\n               <\/jats:sec>\n               <jats:sec>\n                  <jats:title>MAIN RESULTS AND THE ROLE OF CHANCE<\/jats:title>\n                  <jats:p>The review included four eligible articles consisting of three cross-sectional studies and one retrospective cohort study. Two studies defined PCOS using the Rotterdam Criteria, one study used self-report, and one used a clinical gold standard. All case definitions included the International Classification of Diseases (ICD)-9 code 256.4 for \u2018polycystic ovaries\u2019 and three studies used E28.2 for \u2018polycystic ovarian syndrome\u2019. Three studies reported positive predictive value (PPV), which ranged from 30 to 96%. One study reported both PPV (96%) and sensitivity (50%) for one case definition. The pooled PPV estimate for the ICD code-based case definitions was 88% (95% confidence interval 82-95%; I2\u2009=\u2009100%). One study reported fair agreement (percent agreement= 90.3, \u03ba\u2009=\u20090.27, percent agreement bias adjusted \u03ba\u2009=\u20090.81). Overall, the risk of bias of the included studies was low.<\/jats:p>\n               <\/jats:sec>\n               <jats:sec>\n                  <jats:title>LIMITATIONS, REASONS FOR CAUTION<\/jats:title>\n                  <jats:p>There were limited number of validations and precision indices of validations.<\/jats:p>\n               <\/jats:sec>\n               <jats:sec>\n                  <jats:title>WIDER IMPLICATIONS OF THE FINDINGS<\/jats:title>\n                  <jats:p>Further validation of these case definitions in other administrative health datasets, and development of novel coding algorithms is required to inform future population-based studies in PCOS.<\/jats:p>\n               <\/jats:sec>\n               <jats:sec>\n                  <jats:title>STUDY FUNDING\/COMPETING INTEREST(S)<\/jats:title>\n                  <jats:p>No external funding was used and there are no disclosures.<\/jats:p>\n               <\/jats:sec>\n               <jats:sec>\n                  <jats:title>REGISTRATION NUMBER<\/jats:title>\n                  <jats:p>PROSPERO CRD42023385617<\/jats:p>\n               <\/jats:sec>","DOI":"10.1093\/humrep\/deaf094","type":"journal-article","created":{"date-parts":[[2025,5,17]],"date-time":"2025-05-17T20:09:30Z","timestamp":1747512570000},"page":"1579-1586","source":"Crossref","is-referenced-by-count":2,"title":["Validity of administrative health data case definitions for identifying polycystic ovary syndrome: a systematic review and meta-analysis"],"prefix":"10.1093","volume":"40","author":[{"given":"Sophie","family":"Hu","sequence":"first","affiliation":[{"name":"Department of Internal Medicine, University of Manitoba , Winnipeg, MB,","place":["Canada"]}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Sophie","family":"Lalonde-Bester","sequence":"additional","affiliation":[{"name":"Faculty of Medicine & Dentistry, University of Alberta , Edmonton, AB,","place":["Canada"]}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Jenna","family":"Salem","sequence":"additional","affiliation":[{"name":"Department of Medicine, Cumming School of Medicine, University of Calgary , Calgary, AB,","place":["Canada"]}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Sheffinea","family":"Koshy","sequence":"additional","affiliation":[{"name":"Department of Medicine, Cumming School of Medicine, University of Calgary , Calgary, AB,","place":["Canada"]}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0001-7816-3422","authenticated-orcid":false,"given":"Donna","family":"Vine","sequence":"additional","affiliation":[{"name":"Faculty of Medicine & Dentistry, University of Alberta , Edmonton, AB,","place":["Canada"]}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Tyrone G","family":"Harrison","sequence":"additional","affiliation":[{"name":"Department of Medicine, Cumming School of Medicine, University of Calgary , Calgary, AB,","place":["Canada"]},{"name":"Department of Community Health Sciences, Cumming School of Medicine, University of Calgary , Calgary, AB,","place":["Canada"]},{"name":"O\u2019Brien Institute for Public Health and Libin Cardiovascular Institute, University of Calgary , Calgary, AB,","place":["Canada"]}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Jennifer M","family":"Yamamoto","sequence":"additional","affiliation":[{"name":"Department of Internal Medicine, University of Manitoba , Winnipeg, MB,","place":["Canada"]},{"name":"Department of Medicine, Cumming School of Medicine, University of Calgary , Calgary, AB,","place":["Canada"]},{"name":"Children\u2019s Hospital Research Institute of Manitoba, Children's Hospital Foundation of Manitoba , Winnipeg, MB,","place":["Canada"]},{"name":"Department of Community Health Sciences, University of Manitoba , Winnipeg, MB,","place":["Canada"]}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-2233-4613","authenticated-orcid":false,"given":"Jamie L","family":"Benham","sequence":"additional","affiliation":[{"name":"Department of Medicine, Cumming School of Medicine, University of Calgary , Calgary, AB,","place":["Canada"]},{"name":"Department of Community Health Sciences, Cumming School of Medicine, University of Calgary , Calgary, AB,","place":["Canada"]},{"name":"O\u2019Brien Institute for Public Health and Libin Cardiovascular Institute, University of Calgary , Calgary, AB,","place":["Canada"]}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"286","published-online":{"date-parts":[[2025,5,18]]},"reference":[{"key":"2025080101515844800_deaf094-B1","doi-asserted-by":"crossref","first-page":"153","DOI":"10.1210\/clinem\/dgaa675","article-title":"Characterizing the clinical and genetic spectrum of polycystic ovary syndrome in electronic health records","volume":"106","author":"Actkins","year":"2021","journal-title":"J Clin Endocrinol Metab"},{"key":"2025080101515844800_deaf094-B2","doi-asserted-by":"crossref","first-page":"523","DOI":"10.1093\/humrep\/deaa331","article-title":"Harmonizing research outcomes for polycystic ovary syndrome (HARP), a marathon not a sprint: current challenges and future research need","volume":"36","author":"Al Wattar","year":"2021","journal-title":"Hum Reprod"},{"key":"2025080101515844800_deaf094-B3","doi-asserted-by":"crossref","first-page":"404","DOI":"10.1093\/humrep\/dez272","article-title":"Harmonising research outcomes for polycystic ovary syndrome: an international multi-stakeholder core outcome set","volume":"35","author":"Al Wattar","year":"2020","journal-title":"Hum Reprod"},{"key":"2025080101515844800_deaf094-B4","doi-asserted-by":"crossref","first-page":"23","DOI":"10.1186\/s12958-020-00576-1","article-title":"Risk of hypertension in women with polycystic ovary syndrome: a systematic review, meta-analysis and meta-regression","volume":"18","author":"Amiri","year":"2020","journal-title":"Reprod Biol Endocrinol"},{"key":"2025080101515844800_deaf094-B5","doi-asserted-by":"crossref","first-page":"456","DOI":"10.1016\/j.fertnstert.2008.06.035","article-title":"The Androgen Excess and PCOS Society criteria for the polycystic ovary syndrome: the complete task force report","volume":"91","author":"Azziz","year":"2009","journal-title":"Fertil Steril"},{"key":"2025080101515844800_deaf094-B6","doi-asserted-by":"crossref","first-page":"39","DOI":"10.2106\/JBJS.22.00565","article-title":"Administrative data use in National Registry efforts: blessing or curse?","volume":"104","author":"Bedard","year":"2022","journal-title":"J Bone Joint Surg Am"},{"key":"2025080101515844800_deaf094-B7","doi-asserted-by":"crossref","first-page":"2841","DOI":"10.1093\/humrep\/dew218","article-title":"The prevalence and phenotypic features of polycystic ovary syndrome: a systematic review and meta-analysis","volume":"31","author":"Bozdag","year":"2016","journal-title":"Hum Reprod"},{"key":"2025080101515844800_deaf094-B8","doi-asserted-by":"crossref","first-page":"232","DOI":"10.4212\/cjhp.v68i3.1457","article-title":"An introduction to health care administrative data","volume":"68","author":"Cadarette","year":"2015","journal-title":"Can J Hosp Pharm"},{"key":"2025080101515844800_deaf094-B9","doi-asserted-by":"crossref","first-page":"116","DOI":"10.1186\/s12958-015-0115-z","article-title":"Identification of subjects with polycystic ovary syndrome using electronic health records","volume":"13","author":"Castro","year":"2015","journal-title":"Reprod Biol Endocrinol"},{"key":"2025080101515844800_deaf094-B10","doi-asserted-by":"crossref","first-page":"854","DOI":"10.1016\/j.fertnstert.2021.12.027","article-title":"Different pregnancy outcomes according to the polycystic ovary syndrome diagnostic criteria: a systematic review and meta-analysis of 79 studies","volume":"117","author":"Chatzakis","year":"2022","journal-title":"Fertil Steril"},{"key":"2025080101515844800_deaf094-B11","doi-asserted-by":"crossref","first-page":"854","DOI":"10.1080\/09513590.2020.1746761","article-title":"Knowledge of PCOS in physicians-in-training: identifying gaps and educational opportunities","volume":"36","author":"Chemerinski","year":"2020","journal-title":"Gynecol Endocrinol"},{"key":"2025080101515844800_deaf094-B12","doi-asserted-by":"crossref","first-page":"1075","DOI":"10.1093\/humrep\/dex044","article-title":"High prevalence of moderate and severe depressive and anxiety symptoms in polycystic ovary syndrome: a systematic review and meta-analysis","volume":"32","author":"Cooney","year":"2017","journal-title":"Hum Reprod"},{"key":"2025080101515844800_deaf094-B13","doi-asserted-by":"crossref","first-page":"370","DOI":"10.1002\/ijgo.12893","article-title":"Cross-sectional study of the prevalence of polycystic ovary syndrome in rural and urban populations","volume":"146","author":"Deswal","year":"2019","journal-title":"Int J Gynaecol Obstet"},{"key":"2025080101515844800_deaf094-B14","doi-asserted-by":"crossref","first-page":"1380","DOI":"10.1016\/j.fertnstert.2017.04.011","article-title":"Gaps in knowledge among physicians regarding diagnostic criteria and management of polycystic ovary syndrome","volume":"107","author":"Dokras","year":"2017","journal-title":"Fertil Steril"},{"key":"2025080101515844800_deaf094-B15","doi-asserted-by":"crossref","first-page":"911","DOI":"10.1210\/jc.2014-3886","article-title":"The potential implications of a PCOS diagnosis on a woman's long-term health using data linkage","volume":"100","author":"Hart","year":"2015","journal-title":"J Clin Endocrinol Metab"},{"key":"2025080101515844800_deaf094-B16","doi-asserted-by":"crossref","first-page":"557","DOI":"10.1136\/bmj.327.7414.557","article-title":"Measuring inconsistency in meta-analyses","volume":"327","author":"Higgins","year":"2003","journal-title":"BMJ"},{"key":"2025080101515844800_deaf094-B17","doi-asserted-by":"crossref","first-page":"3527","DOI":"10.1038\/s41598-019-40072-0","article-title":"Comparison of self-reported and register-based hospital medical data on comorbidities in women","volume":"9","author":"Ho","year":"2019","journal-title":"Sci Rep"},{"key":"2025080101515844800_deaf094-B18","doi-asserted-by":"crossref","first-page":"339","DOI":"10.1111\/obr.12762","article-title":"Metabolic syndrome in polycystic ovary syndrome: a systematic review, meta-analysis and meta-regression","volume":"20","author":"Lim","year":"2019","journal-title":"Obes Rev"},{"key":"2025080101515844800_deaf094-B19","doi-asserted-by":"crossref","first-page":"1001","DOI":"10.1210\/js.2018-00181","article-title":"Trust in physicians and medical experience beliefs differ between women with and without polycystic ovary syndrome","volume":"2","author":"Lin","year":"2018","journal-title":"J Endocr Soc"},{"key":"2025080101515844800_deaf094-B20","doi-asserted-by":"crossref","first-page":"671","DOI":"10.1016\/S1701-2163(16)32915-2","article-title":"Diagnostic criteria for polycystic ovary syndrome: pitfalls and controversies","volume":"30","author":"Lujan","year":"2008","journal-title":"J Obstet Gynaecol Can"},{"key":"2025080101515844800_deaf094-B21","doi-asserted-by":"crossref","first-page":"544","DOI":"10.1093\/humrep\/dep399","article-title":"The prevalence of polycystic ovary syndrome in a community sample assessed under contrasting diagnostic criteria","volume":"25","author":"March","year":"2010","journal-title":"Hum Reprod"},{"key":"2025080101515844800_deaf094-B22","doi-asserted-by":"crossref","first-page":"1014","DOI":"10.1136\/bmj.39211.453275.80","article-title":"The value of administrative databases","volume":"334","author":"Mohammed","year":"2007","journal-title":"BMJ"},{"key":"2025080101515844800_deaf094-B23","author":"Mousa","year":"2023"},{"key":"2025080101515844800_deaf094-B24","doi-asserted-by":"crossref","first-page":"e39","DOI":"10.1177\/2047487320939674","article-title":"Risk of cardiovascular disease for women with polycystic ovary syndrome: results from a national Danish registry cohort study","volume":"28","author":"Oliver-Williams","year":"2021","journal-title":"Eur J Prev Cardiol"},{"key":"2025080101515844800_deaf094-B25","doi-asserted-by":"crossref","first-page":"n71","DOI":"10.1136\/bmj.n71","article-title":"The PRISMA 2020 statement: an updated guideline for reporting systematic reviews","volume":"372","author":"Page","year":"2021","journal-title":"BMJ"},{"key":"2025080101515844800_deaf094-B26","doi-asserted-by":"crossref","first-page":"788","DOI":"10.1016\/j.fertnstert.2016.12.017","article-title":"Normo- and hyperandrogenic women with polycystic ovary syndrome exhibit an adverse metabolic profile through life","volume":"107","author":"Pinola","year":"2017","journal-title":"Fertil Steril"},{"key":"2025080101515844800_deaf094-B27","doi-asserted-by":"crossref","first-page":"342","DOI":"10.1055\/s-0041-1726866","article-title":"Obesity and the risk of infertility, gestational diabetes, and type 2 diabetes in polycystic ovary syndrome","volume":"38","author":"Pirotta","year":"2020","journal-title":"Semin Reprod Med"},{"key":"2025080101515844800_deaf094-B28","doi-asserted-by":"crossref","first-page":"1424","DOI":"10.1111\/j.1475-6773.2007.00822.x","article-title":"Assessing validity of ICD-9-CM and ICD-10 administrative data in recording clinical conditions in a unique dually coded database","volume":"43","author":"Quan","year":"2008","journal-title":"Health Serv Res"},{"key":"2025080101515844800_deaf094-B29","doi-asserted-by":"crossref","first-page":"19","DOI":"10.1016\/j.fertnstert.2003.10.004","article-title":"Revised 2003 consensus on diagnostic criteria and long-term health risks related to polycystic ovary syndrome","volume":"81","author":"Rotterdam ESHRE\/ASRM-Sponsored PCOS Consensus Workshop Group","year":"2004","journal-title":"Fertil Steril"},{"key":"2025080101515844800_deaf094-B30","doi-asserted-by":"crossref","first-page":"1215","DOI":"10.1007\/s10654-022-00934-w","article-title":"Biases arising from linked administrative data for epidemiological research: a conceptual framework from registration to analyses","volume":"37","author":"Shaw","year":"2022","journal-title":"Eur J Epidemiol"},{"key":"2025080101515844800_deaf094-B31","doi-asserted-by":"crossref","first-page":"523","DOI":"10.1177\/1049732320971235","article-title":"The diagnostic experiences of women with Polycystic Ovary Syndrome (PCOS) in Ontario, Canada","volume":"31","author":"Soucie","year":"2021","journal-title":"Qual Health Res"},{"key":"2025080101515844800_deaf094-B32","doi-asserted-by":"crossref","first-page":"41","DOI":"10.1186\/1741-7015-8-41","article-title":"Polycystic ovary syndrome: a complex condition with psychological, reproductive and metabolic manifestations that impacts on health across the lifespan","volume":"8","author":"Teede","year":"2010","journal-title":"BMC Med"},{"key":"2025080101515844800_deaf094-B33","doi-asserted-by":"crossref","first-page":"2447","DOI":"10.1210\/clinem\/dgad463","article-title":"Recommendations from the 2023 international evidence-based guideline for the assessment and management of polycystic ovary syndrome","volume":"108","author":"Teede","year":"2023","journal-title":"J Clin Endocrinol Metab"},{"key":"2025080101515844800_deaf094-B34","doi-asserted-by":"crossref","first-page":"31","DOI":"10.1186\/s12911-015-0155-5","article-title":"Methods for identifying 30 chronic conditions: application to administrative data","volume":"15","author":"Tonelli","year":"2015","journal-title":"BMC Med Inform Decis Mak"},{"key":"2025080101515844800_deaf094-B35","doi-asserted-by":"crossref","first-page":"126","DOI":"10.1016\/j.jclinepi.2011.08.002","article-title":"Administrative database research has unique characteristics that can risk biased results","volume":"65","author":"van Walraven","year":"2012","journal-title":"J Clin Epidemiol"},{"key":"2025080101515844800_deaf094-B36","doi-asserted-by":"crossref","first-page":"314","DOI":"10.1016\/j.cjco.2023.12.010","article-title":"Increased prevalence of adverse health outcomes across the lifespan in those affected by polycystic ovary syndrome: a Canadian population cohort","volume":"6","author":"Vine","year":"2024","journal-title":"CJC Open"},{"key":"2025080101515844800_deaf094-B37","doi-asserted-by":"crossref","first-page":"29","DOI":"10.1053\/j.ajkd.2010.08.031","article-title":"Validity of administrative database coding for kidney disease: a systematic review","volume":"57","author":"Vlasschaert","year":"2011","journal-title":"Am J Kidney Dis"},{"key":"2025080101515844800_deaf094-B38","doi-asserted-by":"crossref","first-page":"529","DOI":"10.7326\/0003-4819-155-8-201110180-00009","article-title":"QUADAS-2: a revised tool for the quality assessment of diagnostic accuracy studies","volume":"155","author":"Whiting","year":"2011","journal-title":"Ann Intern Med"},{"key":"2025080101515844800_deaf094-B39","doi-asserted-by":"crossref","first-page":"77","DOI":"10.1186\/s12978-018-0519-2","article-title":"A potential link between polycystic ovary syndrome and non-alcoholic fatty liver disease: an update meta-analysis","volume":"15","author":"Wu","year":"2018","journal-title":"Reprod Health"},{"key":"2025080101515844800_deaf094-B40","doi-asserted-by":"crossref","first-page":"39.e1","DOI":"10.1016\/j.ajog.2023.04.010","article-title":"Incidence, prevalence, and trends in polycystic ovary syndrome diagnosis: a United States population-based study from 2006 to 2019","volume":"229","author":"Yu","year":"2023","journal-title":"Am J Obstet Gynecol"},{"key":"2025080101515844800_deaf094-B41","first-page":"377","volume-title":"Polycystic Ovary Syndrome","author":"Zawadski","year":"1992"}],"container-title":["Human Reproduction"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/academic.oup.com\/humrep\/article-pdf\/40\/8\/1579\/63217350\/deaf094.pdf","content-type":"application\/pdf","content-version":"vor","intended-application":"syndication"},{"URL":"https:\/\/academic.oup.com\/humrep\/article-pdf\/40\/8\/1579\/63217350\/deaf094.pdf","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2025,8,1]],"date-time":"2025-08-01T05:52:45Z","timestamp":1754027565000},"score":1,"resource":{"primary":{"URL":"https:\/\/academic.oup.com\/humrep\/article\/40\/8\/1579\/8134299"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2025,5,18]]},"references-count":41,"journal-issue":{"issue":"8","published-online":{"date-parts":[[2025,5,18]]},"published-print":{"date-parts":[[2025,8,1]]}},"URL":"https:\/\/doi.org\/10.1093\/humrep\/deaf094","relation":{},"ISSN":["0268-1161","1460-2350"],"issn-type":[{"value":"0268-1161","type":"print"},{"value":"1460-2350","type":"electronic"}],"subject":[],"published-other":{"date-parts":[[2025,8]]},"published":{"date-parts":[[2025,5,18]]}}}