Abstract
Background: Around 10% of people with inflammatory bowel diseases (IBD) are diagnosed in childhood1. Clinical manifestations are known to differ in children compared to adults2,3. This study aims to describe the real-world characteristics of children with IBD.
Methods: Crohn’s Colitis Care (CCCare) is an IBD-specific electronic medical record (EMR) used at IBD centres across Australasia. Data feed into a de-identified clinical quality registry (CQR), which was interrogated in November 2023. All children (<18 years at time of extract) under active care (encounter within 14 months) were included.
Results: Clinical data from 162 children across 14 centres were available for analysis. Of these, 64.8% (n=105) had Crohn’s disease (CD), 31.5% (n=51) ulcerative colitis (UC) and 3.7% (n=6) IBD-unclassified. There was a roughly equal split in gender (male=55.0%), with a minority aged <10 years (9.9%, n=16). The mean recorded body mass index was 20.5kg/m2 (n=101 with BMI data), with 78.2% in the ‘normal’ range (18.5-24.9kg/m2). Five patients (5.0%) were ‘underweight’ (<18kg/m2), and 16.8% (n=17) were overweight or obese (>25kg/m2).
Only 7.4% (n=12) were currently receiving steroids, and over half (55.6%, n=90) had received an advanced therapy (biologic or small molecule). Few reported incontinence (n=5, 3.1%), and 6% (n=9) had an IBD-related surgery recorded. Around 20% (11/56) had current or previous fistulising CD. On most recent data, the mean faecal calprotectin was 637μg/g, C-reactive protein 6.1mg/L and ESR 9.4mm/hr. In those with UC, 43.7% had either moderate (S2) or severe (S3) disease activity at last assessment (Figure 1). In those with CD, 31.1% had either stricturing (B2, 21.5%) or penetrating intra-abdominal disease (abscess/perforation/phlegmon, B3, 10.6%).
Conclusion: This study provides a detailed real-world overview of IBD in children in Australasia, demonstrating the ability of CCCare to help collate data at scale across a large geography. Data show clear changes in phenotype over time. Such data allow for the tracking and benchmarking of outcomes over time across centres, thus promoting evidence-based care improvements. Ongoing real-world data collection is crucial in optimising management strategies and improving care outcomes.