Abstract
Background and aim: Crohn's Colitis Care, a structured, disease-specific electronic medical record, is proven to promote more complete data capture in adult Inflammatory Bowel Disease care. This study aimed to determine whether similar effectiveness was seen in pediatrics.
Methods: Matched patient records from a hospital's standard electronic medical record (pre-Crohn's Colitis Care) and those in Crohn's Colitis Care were retrospectively reviewed (12 months each). The presence of disease-specific data items per platform were compared (21 core, 5 age-specific). Data are presented as percentage recorded (recorded items/total eligible for age). Descriptive and statistical analytics were used.
Results: Paired records were reviewed for 114 children, of whom 78 (68%) had Crohn's disease and 69 (61%) were male. Median age at diagnosis was 13.5 years (IQR12.0-15.5), with mean disease duration 3.6 years (±2.4). Crohn's Colitis Care was more likely to capture 9 items: general wellbeing, stool urgency and frequency, disease duration, comorbidities, pubertal stage, sexual activity, alcohol and drug usage (each p < 0.05). The standard platform was more likely to capture 4 items: liquid stools, phenotype, disease indices, and vaccinations (each p < 0.05). Crohn's Colitis Care achieved more eligible data items recorded per patient (75.3% ±11.5 vs. 67.7% ± 8.9; p < 0.001). Item completion rate in both platforms inversely correlated with patient age (p < 0.05).
Conclusions: Consistent with findings in adult care, Crohn's Colitis Care achieved more complete disease-data capture in pediatrics compared to a standard platform. Given that not all items were better recorded in the structured platform, work to understand and address barriers is needed to optimize complete data capture for care and research.