Variation in the Care of Children with Inflammatory Bowel Disease Within and Across Canadian Provinces: A Multi-Province Population-Based Cohort Study

M Ellen Kuenzig,1,2 Therese A Stukel,3,4 Matthew W Carroll,5 Gilaad G Kaplan,6 Anthony R Otley,7 Harminder Singh,8– 10 Alain Bitton,11 Stephen G Fung,12,13 Sarah Spruin,3,14 Stephanie Coward,6 Yunsong Cui,15 Zoann Nugent,8 Anne M Griffiths,1,2,16 David R Mack,12,13,17 Kevan Jacobson,18 Geoffrey C Nguyen,3,4,19 Laura E Targownik,19 Wael El-Matary,20 Charles N Bernstein,8,9 Trevor J B Dummer,21 Jennifer L Jones,15 Lisa M Lix,22 Sanjay K Murthy,14,23– 25 Juan Nicolás Peña-Sánchez,26 Soheila Nasiri,12,13 Eric I Benchimol1– 4,16 On behalf of the Canadian Gastro-Intestinal Epidemiology Consortium1SickKids Inflammatory Bowel Disease Centre, Division of Gastroenterology, Hepatology and Nutrition, The Hospital for Sick Children (Sickkids), Toronto, Ontario, Canada; 2Child Health Evaluative Sciences, SickKids Research Institute, The Hospital for Sick Children, Toronto, Ontario, Canada; 3ICES, Toronto, Ontario, Canada; 4Institute of Health Policy, Management and Evaluation, University of Toronto, Toronto, Ontario, Canada; 5Division of Pediatric Gastroenterology, Hepatology and Nutrition, Department of Pediatrics, University of Alberta, Edmonton, Alberta, Canada; 6Departments of Medicine & Community Health Sciences, University of Calgary, Calgary, Alberta, Canada; 7Department of Pediatrics, Dalhousie University, Halifax, Nova Scotia, Canada; 8Univeristy of Manitoba IBD Clinical and Research Centre, University of Manitoba, Winnipeg, Manitoba, Canada; 9Department of Internal Medicine, Max Rady College of Medicine, University of Manitoba, Winnipeg, Manitoba, Canada; 10Research Institute at CancerCare Manitoba, Winnipeg, Manitoba, Canada; 11McGill University Health Centre, Division of Gastroenterology and Hepatology, Montreal, Québec, Canada; 12CHEO Inflammatory Bowel Disease Centre, Division of Gastroenterology, Hepatology and Nutrition, CHEO, Ottawa, Ontario, Canada; 13CHEO Research Institute, Ottawa, Ontario, Canada; 14Ottawa Hospital Research Institute, Ottawa, Ontario, Canada; 15Department of Medicine, Dalhousie University, Halifax, Nova Scotia, Canada; 16Department of Paediatrics, University of Toronto, Toronto, Ontario, Canada; 17Department of Pediatrics, University of Ottawa, Ottawa, Ontario, Canada; 18Department of Pediatrics, BC Children’s Hospital Research Institute, University of British Columbia, Vancouver, British Columbia, Canada; 19Mount Sinai Hospital Centre for Inflammatory Bowel Disease, Department of Medicine, University of Toronto, Toronto, Ontario, Canada; 20Department of Pediatrics, University of Manitoba, Winnipeg, Manitoba, Canada; 21School of Population and Public Health, University of British Columbia, Vancouver, BC, Canada; 22Department of Community Health Sciences, University of Manitoba, Winnipeg, Manitoba, Canada; 23Department of Medicine, University of Ottawa, Ottawa, Ontario, Canada; 24Division of Gastroenterology, The Ottawa Hospital IBD Centre, Ottawa, Ontario, Canada; 25School of Epidemiology and Public Health, University of Ottawa, Ottawa, Ontario, Canada; 26Department of Community Health & Epidemiology, College of Medicine, University of Saskatchewan, Saskatoon, Saskatchewan, CanadaCorrespondence: Eric I Benchimol, The Hospital for Sick Children Division of Gastroenterology, Hepatology and Nutrition 555 University Avenue, Toronto, ON, M5G 1X8, Canada, Fax +1-416-813-4972, Email eric.benchimol@sickkids.caPurpose: The incidence of childhood-onset inflammatory bowel disease (IBD) is rising. We described variation in health services utilization and need for surgery among children with IBD between six and 60 months following IBD diagnosis across Canadian pediatric centers and evaluated the associations between care provided at diagnosis at each center and the variation in these outcomes.Patients and Methods: Using population-based deterministically-linked health administrative data from four Canadian provinces (Alberta, Manitoba, Nova Scotia, Ontario) we identified children diagnosed with IBD < 16 years of age using validated algorithms. Children were assigned to a pediatric center of care using a hierarchical approach based on where they received their initial care. Outcomes included IBD-related hospitalizations, emergency department (ED) visits, and IBD-related abdominal surgery occurring between 6 and sixty months after diagnosis. Mixed-effects meta-analysis was used to pool results and examine the association between center-level care provision and outcomes.Results: We identified 3784 incident cases of pediatric IBD, of whom 2937 (77.6%) were treated at pediatric centers. Almost a third (31.4%) of children had ≥ 1 IBD-related hospitalization and there were 0.66 hospitalizations per person during follow-up. More than half (55.8%) of children had ≥ 1 ED visit and there were 1.64 ED visits per person. Between-center heterogeneity was high for both outcomes; centers where more children visited the ED at diagnosis had more IBD-related hospitalizations and more ED visits during follow-up. Between-center heterogeneity was high for intestinal resection in Crohn’s disease but not colectomy in ulcerative colitis.Conclusion: There is variation in health services utilization among children with IBD and risk of undergoing intestinal resection in those with Crohn’s disease, but not colectomy among children with ulcerative colitis, across Canadian pediatric tertiary-care centers. Improvements in clinical care pathways are needed to ensure all children have equitable and timely access to high quality care.Plain Language Summary: Inflammatory bowel disease (IBD) is a chronic health condition of the gastrointestinal system, which is becoming more common in children. They require lifelong treatment and receiving high quality care is important for preventing complications. We determined if outcomes of children with IBD was different across Canada. We also tested if differences in care at diagnosis was related to outcomes. More than three-quarters of children with IBD were treated at pediatric hospitals. Children treated at some hospitals were more likely to be hospitalized and visit the emergency room when compared to children treated at other hospitals. Children with Crohn’s disease (one type of IBD) were more likely to have surgery at some hospitals when compared to children treated at other hospitals. We should improve care to make sure children living with IBD have timely access to high quality specialist care.Keywords: Crohn’s disease, ulcerative colitis, health administrative data, variation in care, health services utilization, surgery

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