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Comparing Health Administrative and Clinical Registry Data: Trends in Incidence and Prevalence of Pediatric Inflammatory Bowel Disease in British Columbia

Authors Chan JM, Carroll MW, Smyth M, Hamilton Z, Evans D, McGrail K, Benchimol EI, Jacobson K

Received 19 November 2020

Accepted for publication 11 January 2021

Published 11 February 2021 Volume 2021:13 Pages 81—90


Checked for plagiarism Yes

Review by Single anonymous peer review

Peer reviewer comments 4

Editor who approved publication: Professor Henrik Toft Sørensen

Justin M Chan,1,2 Matthew W Carroll,3 Matthew Smyth,4 Zachary Hamilton,2 Dewey Evans,2 Kimberlyn McGrail,5 Eric I Benchimol,6 Kevan Jacobson1,2,4

1Department of Pediatrics, BC Children’s Hospital, Vancouver, British Columbia, Canada; 2BC Children’s Hospital Research Institute, University of British Columbia, Vancouver, British Columbia, Canada; 3Department of Pediatrics, Faculty of Medicine & Dentistry, University of Alberta, Edmonton, Alberta, Canada; 4Division of Gastroenterology, Hepatology and Nutrition, BC Children’s Hospital, Vancouver, British Columbia, Canada; 5Centre for Health Services and Policy Research, University of British Columbia, Vancouver, British Columbia, Canada; 6Division of Gastroenterology, CHEO Inflammatory Bowel Disease Centre and University of Ottawa, Ottawa, Ontario, Canada

Correspondence: Kevan Jacobson
Department of Pediatrics, BC Children’s Hospital, 4480 Oak Street, Vancouver, BC, V6H 3V4, Canada
Tel +1-(604)-875-2332 Ext 1

Purpose: Canada maintains robust health administrative databases and British Columbia Children’s Hospital (BCCH), as the only tertiary care pediatric hospital in British Columbia (BC), maintains a comprehensive clinical inflammatory bowel disease (IBD) registry. To evaluate the strengths and weaknesses of utilizing health administrative and clinical registry data to study the epidemiology of IBD in BC, we conducted a population-based retrospective cohort study of all children < 18 years of age who were diagnosed with IBD between 1996 and 2008 in BC.
Methods: IBD cases from health administrative data were identified using a combination of IBD-coded physician encounters and hospitalizations while a separate IBD cohort was identified from the BCCH clinical registry data. Age and gender standardized incidence and prevalence rates were fitted to Poisson regression models.
Results: The overall incidence of pediatric IBD identified in health administrative data increased from 7.1 (95% CI 5.5– 9.2) in 1996 to 10.3 (95% CI 8.2– 12.7) per 100,000 children in 2008. Similarly, the incidence of the BCCH cohort increased from 4.3 (95% CI 3.0– 6.0) to 9.7 (95% CI 7.6– 12.1) per 100,000. Children aged 10– 17 had the highest rise in incidence in both data sources; however, the administrative data identified significantly more 10– 17-year-olds and significantly less 6– 9-year-olds (p< 0.05) compared to clinical registry data.
Conclusion: While the application of both health administrative and clinical registry data demonstrates that the incidence of IBD is increasing in BC, we identify strengths and limitations to both and suggest that the utilization of either data source requires unique considerations that mitigate misclassification biases.

Keywords: Crohn’s disease, ulcerative colitis, pediatric, health administrative data, clinical registry

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