{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2025,12,2]],"date-time":"2025-12-02T23:16:55Z","timestamp":1764717415584,"version":"3.46.0"},"reference-count":16,"publisher":"Oxford University Press (OUP)","issue":"12","license":[{"start":{"date-parts":[[2025,9,30]],"date-time":"2025-09-30T00:00:00Z","timestamp":1759190400000},"content-version":"vor","delay-in-days":0,"URL":"https:\/\/academic.oup.com\/journals\/pages\/open_access\/funder_policies\/chorus\/standard_publication_model"}],"funder":[{"name":"The Crohn\u2019s in Childhood Research Association (CICRA) the Aage and Johanne Louis-Hansen\u2019s Foundation"}],"content-domain":{"domain":[],"crossmark-restriction":false},"short-container-title":[],"published-print":{"date-parts":[[2025,12,2]]},"abstract":"<jats:title>Abstract<\/jats:title>\n                  <jats:p>Health administrative data (HAD) have significantly increased our knowledge of rare outcomes in inflammatory bowel disease (IBD), such as cancer and mortality. We aimed to assess the information bias imposed by misclassification of the IBD diagnosis in HAD studies by performing quantitative bias analysis (QBA). In a narrative review, we identified pediatric-onset IBD (PIBD) HAD studies assessing cancer risk in which the PIBD case identification was based on published validation studies. We then performed QBA to adjust for non-differential exposure misclassification using the sensitivity and specificity values from country or region-specific validation studies. We present QBA on four recent studies reporting on cancer outcomes. Generally, we found the reported cancer risks biased towards the null. In the most extreme example, the relative risk changed from 2.0 (95% CI, 1.2-3.4) to 5.8 (95%CI, 2.5-13.7) after bias adjustment. The risk difference for this example rose from 1.0% (95% CI, 0.1-1.9) to 3.8% (95%CI, 1.4-7.9) after bias adjustment. The results from this study indicate that most HAD-based studies on rare long-term consequences of IBD significantly underestimate the true risk of the outcomes. These results can be extrapolated to other HAD-based studies with imperfect specificity of the case assertion algorithms.<\/jats:p>","DOI":"10.1093\/aje\/kwaf216","type":"journal-article","created":{"date-parts":[[2025,9,25]],"date-time":"2025-09-25T11:58:42Z","timestamp":1758801522000},"page":"3654-3657","source":"Crossref","is-referenced-by-count":0,"title":["Studies based on health administrative data regarding rare outcomes in inflammatory bowel disease significantly underestimate the true risk\u2014the importance of specificity"],"prefix":"10.1093","volume":"194","author":[{"ORCID":"https:\/\/orcid.org\/0000-0002-6956-7676","authenticated-orcid":false,"given":"Mikkel","family":"Malham","sequence":"first","affiliation":[{"name":"Child Life and Health, College of Medicine and Veterinary Medicine, University of Edinburgh , Edinburgh ,","place":["United Kingdom"]},{"name":"Department of Pediatric Gastroenterology and Nutrition, Royal Hospital for Children and Young People , Edinburgh ,","place":["United Kingdom"]},{"name":"Department of Public Health, Copenhagen Health Complexity Centre, University of Copenhagen , Copenhagen ,","place":["Denmark"]},{"name":"Department of Pediatric and Adolescent Medicine, Copenhagen University Hospital\u2014Amager and Hvidovre , Copenhagen ,","place":["Denmark"]},{"name":"Division of Gastroenterology, Hepatology and Nutrition, Department of Paediatrics, The Hospital for Sick Children, University of Toronto , Toronto ,","place":["Canada"]}],"role":[{"role":"author","vocabulary":"crossref"}]},{"ORCID":"https:\/\/orcid.org\/0000-0001-8855-3598","authenticated-orcid":false,"given":"Eric I","family":"Benchimol","sequence":"additional","affiliation":[{"name":"Division of Gastroenterology, Hepatology and Nutrition, SickKids Inflammatory Bowel Disease Centre, The Hospital for Sick Children , Toronto ,","place":["Canada"]},{"name":"Department of Paediatrics, Institute of Health Policy, Management and Evaluation, University of Toronto , Toronto ,","place":["Canada"]},{"name":"Child Health Evaluative Sciences, SickKids Research Institute, The Hospital for Sick Children , Toronto ,","place":["Canada"]},{"name":"ICES , Toronto ,","place":["Canada"]}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Matthew P","family":"Fox","sequence":"additional","affiliation":[{"name":"Departments of Epidemiology and Global Health, Boston University School of Public Health , Boston ,","place":["United States"]}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"David C","family":"Wilson","sequence":"additional","affiliation":[{"name":"Child Life and Health, College of Medicine and Veterinary Medicine, University of Edinburgh , Edinburgh ,","place":["United Kingdom"]},{"name":"Department of Pediatric Gastroenterology and Nutrition, Royal Hospital for Children and Young People , Edinburgh ,","place":["United Kingdom"]}],"role":[{"role":"author","vocabulary":"crossref"}]}],"member":"286","published-online":{"date-parts":[[2025,9,30]]},"reference":[{"key":"2025120218123756700_ref1","doi-asserted-by":"publisher","DOI":"10.1016\/j.jaut.2024.103321","article-title":"The risk of cancer in pediatric-onset immune-mediated inflammatory diseases\u2014a nationwide study","volume":"149","author":"Ehrstr\u00f6m","year":"2024","journal-title":"J Autoimmun"},{"issue":"1","key":"2025120218123756700_ref2","doi-asserted-by":"publisher","first-page":"386","DOI":"10.1053\/j.gastro.2020.03.048","article-title":"Long-term cancer risk in patients with pediatric-onset inflammatory bowel diseases in the Canadian population","volume":"159","author":"El-Matary","year":"2020","journal-title":"Gastroenterology."},{"issue":"4","key":"2025120218123756700_ref3","doi-asserted-by":"publisher","first-page":"1609","DOI":"10.1053\/j.gastro.2020.06.030","article-title":"Cancer risk in pediatric-onset inflammatory bowel disease: a population-based Danish Cohort Study","volume":"159","author":"Kj\u00e6rgaard","year":"2020","journal-title":"Gastroenterology."},{"key":"2025120218123756700_ref4","doi-asserted-by":"publisher","DOI":"10.1136\/bmj.j3951","article-title":"Childhood onset inflammatory bowel disease and risk of cancer: a Swedish nationwide cohort study 1964-2014","volume":"358","author":"Ol\u00e9n","year":"2017","journal-title":"BMJ"},{"issue":"aug19 1","key":"2025120218123756700_ref5","doi-asserted-by":"publisher","DOI":"10.1136\/bmj.c4226","article-title":"Importance of accurately identifying disease in studies using electronic health records","volume":"341","author":"Manuel","year":"2010","journal-title":"BMJ."},{"issue":"11","key":"2025120218123756700_ref6","doi-asserted-by":"publisher","first-page":"1612","DOI":"10.1093\/aje\/kwae071","article-title":"Validation of algorithms in studies based on routinely collected health data: general principles","volume":"193","author":"Ehrenstein","year":"2024","journal-title":"Am J Epidemiol"},{"key":"2025120218123756700_ref7","doi-asserted-by":"crossref","DOI":"10.1007\/978-3-030-82673-4","volume-title":"Applying Quantitative Bias Analysis to Epidemiologic Data","author":"Fox","year":"2021"},{"issue":"10","key":"2025120218123756700_ref8","doi-asserted-by":"publisher","first-page":"916","DOI":"10.1093\/oxfordjournals.aje.a009735","article-title":"Epidemiology of Crohn\u2019s disease and ulcerative colitis in a Central Canadian Province: a population-based study","volume":"149","author":"Bernstein","year":"1999","journal-title":"Am J Epidemiol"},{"issue":"10","key":"2025120218123756700_ref9","doi-asserted-by":"publisher","first-page":"1171","DOI":"10.1080\/00365521.2020.1807598","article-title":"Validation of ulcerative colitis and Crohn\u2019s disease and their phenotypes in the Danish National Patient Registry using a population-based cohort","volume":"55","author":"Lo","year":"2020","journal-title":"Scand J Gastroenterol"},{"key":"2025120218123756700_ref10","doi-asserted-by":"publisher","first-page":"671","DOI":"10.2147\/CLEP.S151339","article-title":"Development and validation of novel algorithms to identify patients with inflammatory bowel diseases in Israel: an epi-IIRN group study","volume":"10","author":"Friedman","year":"2018","journal-title":"Clin Epidemiol"},{"key":"2025120218123756700_ref11","doi-asserted-by":"publisher","first-page":"591","DOI":"10.2147\/CLEP.S358031","article-title":"Identification of childhood-onset inflammatory bowel disease in Swedish Healthcare Registers: a validation study","volume":"14","author":"Mouratidou","year":"2022","journal-title":"Clin Epidemiol"},{"issue":"5","key":"2025120218123756700_ref12","doi-asserted-by":"publisher","first-page":"786","DOI":"10.1093\/ecco-jcc\/jjab205","article-title":"Risk of cancer in paediatric onset inflammatory bowel diseases: a nation-wide study from the epi-IIRN","volume":"16","author":"Atia","year":"2022","journal-title":"J Crohns Colitis"},{"issue":"7_suppl","key":"2025120218123756700_ref13","doi-asserted-by":"publisher","first-page":"42","DOI":"10.1177\/1403494810393562","article-title":"The Danish cancer registry","volume":"39","author":"Gjerstorff","year":"2011","journal-title":"Scand J Public Health"},{"issue":"1","key":"2025120218123756700_ref14","first-page":"45","article-title":"Local recurrence after rectal cancer treatment in Manitoba","volume":"52","author":"Latosinsky","year":"2009","journal-title":"Can J Surg"},{"issue":"1","key":"2025120218123756700_ref15","first-page":"23","article-title":"An assessment of the completeness and timeliness of the Israel National Cancer Registry","volume":"23","author":"Moore","year":"2021","journal-title":"Isr Med Assoc J"},{"issue":"1","key":"2025120218123756700_ref16","doi-asserted-by":"publisher","first-page":"27","DOI":"10.1080\/02841860802247664","article-title":"The completeness of the Swedish Cancer Register\u2014a sample survey for year 1998","volume":"48","author":"Barlow","year":"2009","journal-title":"Acta Oncol (Madr)"}],"container-title":["American Journal of Epidemiology"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/academic.oup.com\/aje\/advance-article-pdf\/doi\/10.1093\/aje\/kwaf216\/64443170\/kwaf216.pdf","content-type":"application\/pdf","content-version":"am","intended-application":"syndication"},{"URL":"https:\/\/academic.oup.com\/aje\/article-pdf\/194\/12\/3654\/64443170\/kwaf216.pdf","content-type":"application\/pdf","content-version":"vor","intended-application":"syndication"},{"URL":"https:\/\/academic.oup.com\/aje\/article-pdf\/194\/12\/3654\/64443170\/kwaf216.pdf","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2025,12,2]],"date-time":"2025-12-02T23:12:44Z","timestamp":1764717164000},"score":1,"resource":{"primary":{"URL":"https:\/\/academic.oup.com\/aje\/article\/194\/12\/3654\/8268866"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2025,9,30]]},"references-count":16,"journal-issue":{"issue":"12","published-online":{"date-parts":[[2025,9,30]]},"published-print":{"date-parts":[[2025,12,2]]}},"URL":"https:\/\/doi.org\/10.1093\/aje\/kwaf216","relation":{},"ISSN":["0002-9262","1476-6256"],"issn-type":[{"type":"print","value":"0002-9262"},{"type":"electronic","value":"1476-6256"}],"subject":[],"published-other":{"date-parts":[[2025,12]]},"published":{"date-parts":[[2025,9,30]]}}}