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Phenotypic Presentation of Pediatric Inflammatory Bowel Disease Through 4 Decades: The Pediatric NorDIBD Cohort
Mads Lie1, Søren Raunsgaard Skjernaa1, Karoline Mathilde Mose Klitgaard1
1Center for Molecular Prediction of Inflammatory Bowel Disease, PREDICT, Department of Clinical Medicine, Aalborg University, Aalborg, Denmark.
Insights
Pediatric inflammatory bowel disease (IBD) incidence and severity increased over four decades in North Denmark. This trend highlights the need for further research into pediatric IBD outcomes.
Area of Science:
- Gastroenterology
- Pediatrics
- Epidemiology
Background:
- The global incidence of pediatric inflammatory bowel disease (IBD), including ulcerative colitis (UC) and Crohn's disease (CD), is rising.
- Understanding the evolving patterns of pediatric IBD is crucial for effective management and research.
Purpose of the Study:
- To establish and characterize a population-based cohort of pediatric IBD patients in the North Denmark Region.
- To analyze trends in incidence, disease presentation, and family history over a 40-year period.
Main Methods:
- A cohort of 468 children diagnosed with IBD between 1978 and 2020 was identified in the North Denmark Region.
- Patient data, including disease characteristics and family history, were manually extracted from medical records.
- Incidence rates, disease extent, and age at diagnosis were analyzed over time.
Main Results:
- The incidence of pediatric IBD increased by 272%, with a notable rise in Crohn's disease (CD) proportion.
- The median age at diagnosis was 15.4 years and increased over time for both UC and CD.
- Increased diagnoses of pancolitis in UC and ileocolonic/colonic disease with penetrating features in CD were observed.
Conclusions:
- The Pediatric NorDIBD cohort reveals a significant increase in pediatric IBD incidence and disease extent over four decades.
- This cohort provides a valuable resource for future research on the long-term outcomes of pediatric IBD.
Introduction:
The incidence of pediatric inflammatory bowel disease (IBD), encompassing ulcerative colitis (UC) and Crohn's disease (CD), is increasing worldwide. Thus, a thorough understanding of the development and presentation of pediatric IBD is essential. This study aims to establish and characterize a comprehensive population-based cohort of all patients with pediatric IBD in the North Denmark Region spanning 4 decades.
Methods:
We identified all children (n = 468) diagnosed with IBD in the North Denmark Region (589,936 inhabitants) during 1978-2020, establishing the Pediatric NorDIBD cohort. Patient characteristics were manually gathered from medical records. We examined developments in incidence, disease presentation, and family history of IBD over time.
Results:
A total of 244 children with UC and 224 children with CD were diagnosed during 1978-2020. Incidence rate of pediatric IBD had increased 272%. The proportion of CD had increased. The median age at diagnosis was 15.4 years for both UC and CD and increased over time. In UC, the proportions of children diagnosed with pancolitis increased over time. For CD, most children were diagnosed with ileocolonic (39.3%) or colonic (40.2%) disease, and the proportion presenting with ileocolonic and penetrating CD increased over time. The 13% of patients who had a first-degree relative with IBD were younger at diagnosis.
Discussion:
The newly established unselected population-based pediatric NorDIBD cohort shows an increase in both incidence and extensiveness of newly diagnosed pediatric IBD over the last 4 decades and provides a foundation for future research into the long-term outcomes of pediatric IBD.
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