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Crohn's Colitis Care, a Disease-Specific Electronic Medical Record, Enhances Data Capture in Pediatric Inflammatory
Joseph Louis Pipicella1,2,3, Shoma Dutt4,5, Kunal Thacker4
1University of New South Wales, Medicine & Health (South Western Sydney Clinical School) Sydney New South Wales Australia.
Insights
Crohn's Colitis Care, a specialized electronic record, improved pediatric Inflammatory Bowel Disease data capture compared to standard systems. Further optimization is needed for comprehensive data collection in pediatric IBD care and research.
Area of Science:
- Pediatric Gastroenterology
- Clinical Informatics
- Health Data Management
Background:
- Inflammatory Bowel Disease (IBD) management requires comprehensive data for effective care.
- Crohn's Colitis Care (CCC) is a structured electronic medical record (EMR) system known to enhance data capture in adult IBD patients.
- The effectiveness of CCC in pediatric IBD populations remained to be determined.
Purpose of the Study:
- To evaluate the efficacy of the Crohn's Colitis Care (CCC) system in pediatric Inflammatory Bowel Disease (IBD) care.
- To compare data capture completeness between CCC and standard EMR platforms in pediatric patients.
- To identify specific data points that are better or worse captured by each system.
Main Methods:
- Retrospective review of 114 pediatric patient records over 12-month periods for both CCC and standard EMR systems.
- Comparison of the presence of 21 core and 5 age-specific disease-related data items between the two platforms.
- Statistical analysis including descriptive statistics and paired comparisons to assess differences in data capture rates.
Main Results:
- Crohn's Colitis Care (CCC) demonstrated significantly higher overall data capture rates (75.3%) compared to standard EMRs (67.7%) (p < 0.001).
- CCC showed improved recording for items such as general wellbeing, stool characteristics, disease duration, and comorbidities.
- Standard EMRs were more effective in capturing data on liquid stools, phenotype, disease indices, and vaccinations; data completeness correlated inversely with patient age.
Conclusions:
- The Crohn's Colitis Care (CCC) system enhances disease-specific data capture in pediatric Inflammatory Bowel Disease (IBD) care, mirroring findings in adult populations.
- While CCC improves overall data completeness, certain data points require further attention for optimization.
- Continued efforts are necessary to address barriers and maximize data capture for improved pediatric IBD care and research.
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.
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