Pipicella Joseph Louis, Dutt Shoma, Thacker Kunal, Connor Susan Jane, Andrews Jane Mary, Vernon-Roberts Angharad
University of New South Wales, Medicine & Health (South Western Sydney Clinical School) Sydney New South Wales Australia.
Ingham Institute for Applied Medical Research, Gastroenterology, Hepatology and Inflammatory Bowel Disease Research Group Liverpool New South Wales Australia.
JGH Open. 2025 Apr 30;9(5):e70153. doi: 10.1002/jgh3.70153. eCollection 2025 May.
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.
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.
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 < 0.05). The standard platform was more likely to capture 4 items: liquid stools, phenotype, disease indices, and vaccinations (each < 0.05). Crohn's Colitis Care achieved more eligible data items recorded per patient (75.3% ±11.5 vs. 67.7% ± 8.9; < 0.001). Item completion rate in both platforms inversely correlated with patient age ( < 0.05).
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.
克罗恩结肠炎护理系统（Crohn's Colitis Care）是一种结构化的、针对特定疾病的电子病历，已被证明能促进成人炎症性肠病护理中更完整的数据采集。本研究旨在确定儿科是否也有类似效果。
回顾性分析一家医院标准电子病历（克罗恩结肠炎护理系统之前）与克罗恩结肠炎护理系统中匹配的患者记录（各12个月）。比较每个平台上特定疾病数据项的存在情况（21项核心数据项，5项年龄特异性数据项）。数据以记录百分比（记录项数/该年龄 eligible 总数）呈现。采用描述性和统计分析方法。
对114名儿童的配对记录进行了审查，其中78名（68%）患有克罗恩病，69名（61%）为男性。诊断时的中位年龄为13.5岁（四分位间距12.0 - 15.5），平均病程3.6年（±2.4）。克罗恩结肠炎护理系统更有可能采集到9项数据：总体健康状况、大便急迫感和频率、病程、合并症、青春期阶段、性活动、酒精和药物使用情况（每项P < 0.05）。标准平台更有可能采集到4项数据：水样便、表型、疾病指数和疫苗接种情况（每项P < 0.05）。克罗恩结肠炎护理系统每位患者记录的 eligible 数据项更多（75.3% ±11.5 对比 67.7% ± 8.9；P < 0.001）。两个平台的数据项完成率均与患者年龄呈负相关（P < 0.05）。
与成人护理研究结果一致，与标准平台相比，克罗恩结肠炎护理系统在儿科实现了更完整的疾病数据采集。鉴于并非所有数据项在结构化平台上的记录都更好，需要开展工作以了解并解决障碍，从而优化护理和研究中的完整数据采集。
