Tischler Luisa, Boerkoel Aletta, Krause Heiko, van den Berg Neeltje, de Laffolie Jan
Greifswald University Hospital, Institute for Community Medicine and German Center for Pediatric and Adolescent Medicine (DZKJ), Greifswald/Rostock site; Justus Liebig University Giessen, Center for Pediatrics and Adolescent Medicine, Department of General Pediatrics and Neonatology.
Dtsch Arztebl Int. 2024 Sep 20;121(19):627-633. doi: 10.3238/arztebl.m2024.0168.
For children and adolescents with chronic inflammatory bowel disease (IBD), treatment that is not in adequate conformity with the guidelines can adversely affect both the course of disease and the patients' development. The targeted use of digital patient registries may improve real-life adherence to the recommendations of evidence-based guidelines.
In a cluster-randomized, controlled trial (DRKS00015505), treatment providers for the intervention group (IG) documented the treatment of children and adolescents with IBD in the CEDATA-GPGE patient registry; they received automated feedback on the data they entered and on potential deviations of the documented treatment from recommendations contained in the guidelines (care deficits). Treatments providers for the control group (CG) documented treatments as previously, i.e., only in the patients' charts. At the end of a twelve-month observation period, the data from both groups at baseline and on follow-up were analyzed in an intergroup comparison. The primary endpoint was the number of care deficits at twelve months.
319 patients were recruited from 47 pediatric gas troen tero logical centers in Germany (IG: 21 centers and 160 subjects; CG: 26 centers and 159 subjects). Among the 146 subjects in the IG who were followed up at 12 months, there were an average (mean) of 0.17 care deficits per patient (95% confidence interval [0.10; 0.24]). Among the 134 subjects in the CG who were followed up at 12 months, there were an average (mean) of 0.55 [0.43; 0.66] identified care deficits per patient (p < 0.0001).
Registry-based feedback can help bring treatment and its documentation into better con for - mity with the relevant guidelines and thereby reduce or prevent care deficits in children and adolescents with IBD.
对于患有慢性炎症性肠病（IBD）的儿童和青少年，不符合指南的治疗可能会对疾病进程和患者发育产生不利影响。针对性地使用数字患者登记系统可能会提高在实际生活中对循证指南建议的依从性。
在一项整群随机对照试验（DRKS00015505）中，干预组（IG）的治疗提供者在CEDATA - GPGE患者登记系统中记录IBD儿童和青少年的治疗情况；他们会收到关于所输入数据以及所记录治疗与指南中建议（护理缺陷）潜在偏差的自动反馈。对照组（CG）的治疗提供者按以前的方式记录治疗情况，即仅在患者病历中记录。在十二个月的观察期结束时，对两组基线和随访数据进行组间比较分析。主要终点是十二个月时的护理缺陷数量。
从德国47个儿科胃肠病中心招募了319名患者（IG：21个中心和160名受试者；CG：26个中心和159名受试者）。在IG组12个月时接受随访的146名受试者中，每位患者平均有0.17个护理缺陷（95%置信区间[0.10；0.24]）。在CG组12个月时接受随访的134名受试者中，每位患者平均有0.55[0.43；0.66]个已识别的护理缺陷（p<0.0001）。
基于登记系统的反馈有助于使治疗及其记录更好地符合相关指南，从而减少或预防IBD儿童和青少年的护理缺陷。
