Creation and validation of a citywide pediatric asthma registry for the District of Columbia

To create and validate a citywide pediatric Asthma Registry to improve the care and outcomes of children and adolescents in Washington, DC through data-driven quality improvement (QI). All available electronic health record data from inpatient and outpatient domains of Children’s National Hospital were aggregated from an existing enterprise data warehouse. Inclusion criteria included asthma relevant ICD-10 codes over the prior 24 months. Available Asthma Registry measures include patient demographics, ambulatory visits, hospital admissions, persistent asthma diagnoses, and prescription of controller medications. Data capture was validated using US Census data and current asthma prevalence estimate of the Behavioral Risk Factor Surveillance System (BRFSS). The registry identified 15,991 DC children and adolescents with asthma aged 0–17 years, inclusive, at the end of 2020. This was 14.2% higher than the estimate of 14,001 children derived from BRFSS. Characteristics of those in the registry included: mean age of 9.5 (1.4) years, 57.9% male, 72.3% Black, and 66.7% publicly insured. Over the prior 24 months, 30.3% had ≥1 emergency department visit, and 10.5% had ≥1 hospital admission. Controller medications were prescribed for 59.6% of children with persistent asthma. Rates varied by sampled primary care practice sites. A population-level pediatric asthma registry captures more children and adolescents with asthma in DC then a BRFSS-derived estimate, and provides city-wide measures of asthma-related utilization. The registry allows for stratification by primary care practice locations and asthma characteristics, supporting the design, implementation, and evaluation of QI projects at the practice, health system, and population levels. Supplemental data for this article can be accessed at publisher’s website.

为构建并验证全市范围的儿童哮喘登记系统（pediatric Asthma Registry），依托数据驱动的质量改进（quality improvement, QI）模式，提升华盛顿哥伦比亚特区（Washington, DC）儿童与青少年的哮喘诊疗质量与预后结局。本研究从现有企业级数据仓库中，提取了华盛顿国家儿童医院（Children’s National Hospital）住院与门诊数据域的全部可用电子健康档案数据。纳入标准为：研究对象在过去24个月内存在与哮喘相关的国际疾病分类第十版（ICD-10）编码记录。该登记系统可采集的指标涵盖患者人口统计学特征、门诊就诊情况、住院收治情况、持续性哮喘诊断结果以及哮喘控制性药物处方情况。数据采集的有效性通过美国人口普查数据与行为风险因素监测系统（Behavioral Risk Factor Surveillance System, BRFSS）的当前哮喘患病率估算值予以验证。截至2020年末，该登记系统共识别出华盛顿哥伦比亚特区15991名0至17岁（含两端）的哮喘患儿及青少年，该人数较BRFSS估算的14001名患儿高出14.2%。登记系统内研究对象的特征如下：平均年龄为9.5（标准差1.4）岁，男性占比57.9%，黑人占比72.3%，参加公共医疗保险者占比66.7%。在过去24个月内，30.3%的研究对象至少发生1次急诊就诊，10.5%至少有1次住院收治记录。59.6%的持续性哮喘患儿获得了哮喘控制性药物处方。各项指标的发生率在纳入抽样的基层医疗执业机构间存在显著差异。该全市范围的儿童哮喘登记系统所识别的哮喘患儿及青少年人数，较BRFSS的估算值更高，同时可提供全特区范围内与哮喘相关的医疗服务利用情况指标。该登记系统支持按基层医疗执业机构地点与哮喘特征进行分层分析，可为基层医疗、医疗系统及人群层面的质量改进项目的设计、实施与评估提供有力支撑。本文补充数据可通过出版方官网获取。