Department of Pediatrics, Children's Mercy Hospital, Kansas City, MO.
Children's Mercy Research Institute, Kansas City, MO.
JCO Clin Cancer Inform. 2021 Mar;5:239-251. doi: 10.1200/CCI.20.00144.
Children with acute lymphoblastic leukemia (ALL) are treated according to risk-based protocols defined by the Children's Oncology Group (COG). Alignment between real-world clinical practice and protocol milestones is not widely understood. Aggregate deidentified electronic health record (EHR) data offer a useful resource to evaluate real-world clinical practice.
A cohort of children with ALL was identified in the Cerner Health Facts deidentified aggregate EHR data. Manual review identified candidate procedural milestones. Automated methods were developed to classify likely standard-risk precursor B-cell ALL patients. Milestone procedures were adjusted relative to initiation of therapy and then aligned to the COG protocols for standard induction therapy.
We identified 7,728 patients with pediatric ALL with 188,187 encounters. Records for lumbar punctures (LP) and bone marrow biopsies were frequently present in the data and were appropriate targets to evaluate guideline performance. Alluvial graph analysis of 14 health systems indicated that none of the systems have data from all three COG-recommended lumbar procedures for all patients but alignment demonstrated that most systems test at the recommended times.
Source-system variation introduces inconsistency and incompleteness into aggregate EHR data. Data visualization was helpful in characterizing and interpreting the data. Health systems with patients meeting the inclusion criteria demonstrated strong alignment with the recommended milestones for LP. Large-scale aggregate EHR data are useful to evaluate alignment of recommended versus actual clinical milestones in support of treating children with ALL. This work can inform other guideline and protocol driven care.
儿童急性淋巴细胞白血病（ALL）患者根据儿童肿瘤学组（COG）制定的基于风险的方案进行治疗。目前尚不清楚真实世界临床实践与方案里程碑之间的一致性。汇总的去识别电子健康记录（EHR）数据为评估真实世界临床实践提供了有用的资源。
在 Cerner Health Facts 去识别汇总 EHR 数据中确定了一组 ALL 患儿。手动审查确定了候选程序里程碑。开发了自动方法来对可能的标准风险前体 B 细胞 ALL 患者进行分类。对里程碑程序进行了调整，以适应治疗的开始，然后与 COG 标准诱导治疗方案相匹配。
我们确定了 7728 例儿科 ALL 患者，共 188187 次就诊。数据中经常存在腰椎穿刺（LP）和骨髓活检的记录，这些是评估指南性能的合适目标。14 个卫生系统的冲积图分析表明，没有一个系统为所有患者提供了 COG 推荐的所有三种 LP 程序的数据，但一致性表明，大多数系统都在推荐的时间进行检测。
源系统的差异给汇总 EHR 数据带来了不一致性和不完整性。数据可视化有助于对数据进行特征描述和解释。符合纳入标准的患者的卫生系统与 LP 的推荐里程碑具有很强的一致性。大规模的汇总 EHR 数据可用于评估推荐与实际临床里程碑的一致性，以支持 ALL 患儿的治疗。这项工作可以为其他指南和方案驱动的护理提供信息。
