Pilot Study to Develop a Functional Status Score for Children with Acute Neurologic Illnesses and Injuries

项目总结 电子病历(EMR)数据是一种前景看好但未得到充分利用的评估资源 侧重于破坏性儿科健康事件的干预措施，如神经损伤和疾病。 然而，使用现有数据的一个限制是缺乏普遍使用的、标准化的、有意义的结果 数据集中的度量值。该项目的总体目标是论证可行性并证明 开发使用临床相关索赔的儿科功能状态评分(PFSS)的概念 来自电子病历的数据(即诊断、程序、药品和耐用品)，以准确表示 儿童的功能活动能力、自理能力和认知/沟通状态。我们的假设是 与儿童临床病程中的特定点相关的索赔数据星座是准确的 反映当时孩子的机能状态。这项研究的基本原理是一种功能状态 基于现成的高质量大数据来源的评分将使研究人员能够比较 儿科康复干预的有效性。这样的工具是必要的，以使研究人员能够 随时快速准确地评估功能状态，包括特定于儿童的索赔数据。vbl.使用 共识方法论(德尔菲法和名义群组技术)，本研究将有十位专家参与 儿科神经学、创伤和康复临床医生以确定哪些帐单代码与临床相关 儿童的功能活动能力、自理能力和认知/沟通状态(目标1)。通过创建 预测模型，然后研究人员将确定使用识别的计费代码来开发 在出院时准确地代表儿童在这些领域的功能状态的PFSS 住院康复(目标2)。将根据以下功能独立性度量对PFSS进行校准 儿童(WeeFIM™)，一种经过验证但并不普遍使用的结果衡量标准。AIM 2将合并 1797名(6个月至18岁)急性神经损伤儿童的电子病历回顾数据 2000年至#年间在大型儿科第四军医中心住院康复室住院的疾病 2019年。这项工作的结果将为随后的R01提交提供必要的概念证明 其中，我们将在多地点提案中全面开发和验证PFSS。归根结底，依赖于 高度保守的、针对儿童的索赔数据非常重要，因为它提供了一种变革性的工具， 研究人员可以利用大数据来确定急性神经病学干预的有效性 有相关索赔数据的任何时间的伤害或疾病，且不会给患者或 临床医生。我们的设计创新缓解了当前在儿科使用大数据的挑战 康复研究通过基于儿童特定索赔数据创建具有临床意义的PFSS 调查人员可以立即使用来研究对急性神经损伤儿童的干预措施 疾病。

PROJECT SUMMARY Electronic Medical Record (EMR) data represents a promising, but under-utilized, resource for evaluating interventions that focus on devastating pediatric health events such as neurologic injuries and illnesses. However, a limitation to using existing data is the lack of universally used, standardized, meaningful outcome measures within the datasets. The overall objective of this project is to demonstrate feasibility and proof of concept for the development of a Pediatric Functional Status Score (PFSS) that uses clinically relevant claims data from the EMR (i.e., diagnoses, procedures, pharmaceuticals, and durable goods) to accurately represent a child’s functional mobility, self-care, and cognitive/communication status. The hypothesis is that the constellation of claims data associated with a particular point in a child’s clinical course is an accurate reflection of the child’s functional status at that time. The rationale for this research is that a functional status score based on readily available, high-quality big data sources will allow researchers to compare the effectiveness of pediatric rehabilitation interventions. Such a tool is necessary to give researchers the ability to quickly and accurately assess functional status at any time that includes child-specific claims data. Using consensus methodology (Delphi method and nominal group technique), this study will engage ten expert pediatric neurology, trauma, and rehabilitation clinicians to determine which billing codes are clinically relevant to a child’s functional mobility, self-care, and cognitive/communication status (Aim 1). Through the creation of predictive models, researchers will then determine the feasibility of using identified billing codes to develop a PFSS that accurately represents a child’s functional status in these domains at the time of discharge from inpatient rehabilitation (Aim 2). The PFSS will be calibrated against the Functional Independence Measure for Children (WeeFIM™), a validated, but not universally, used outcome measure. Aim 2 will incorporate retrospective data from the EMR for the 1,797 children (6 months to 18 years) with acute neurologic injuries or illnesses admitted to the Inpatient Rehabilitation Unit at large pediatric quaternary center between 2000 and 2019. The results of this work will provide the necessary proof of concept for a subsequent R01 submission wherein we will fully develop and validate the PFSS in a multi-site proposal. Ultimately, a PFSS that relies on highly conserved, child-specific claims data is significant because it provides a transformative tool that researchers can use to harness big data to determine the effectiveness of interventions for acute neurologic injury or illness at any time that has associated claims data and without additional burden to patients or clinicians. The innovation of our design mitigates current challenges to the use of big data in pediatric rehabilitation research by creating a clinically meaningful PFSS based on child-specific claims data that investigators can use immediately to study interventions for children with acute neurologic injuries and illnesses.