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

Purpose: 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