Linking State Medicaid and Congenital Heart Surgical Registry Data: Building Capacity to Assess Disparities in Longitudinal Outcomes and Value for Children with Congenital Heart Disease

将州医疗补助和先天性心脏病手术登记数据联系起来：评估先天性心脏病儿童的纵向结果差异和价值的能力建设

• 批准号: 10327311
• 负责人: Brett Romeo Anderson
• 金额: $ 38.87万
• 依托单位: COLUMBIA UNIVERSITY HEALTH SCIENCES
• 依托单位国家: 美国
• 财政年份: 2020
• 资助国家: 美国
• 起止时间: 2020-01-05 至 2023-12-31
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/10327311
• 关键词: Accident and Emergency department; Accounting; Adult; Affect; American; American Heart Association; Automobile Driving; Base Ratios; Birth; Cardiac; Cardiac Surgery procedures; Cardiology; Caring; Censuses; Centers for Disease Control and Prevention (U.S.); Cessation of life; Charge; Child; Child Mortality; Childhood; Chronic Disease; Clinical; Congenital Abnormality; Congenital Heart Defects; Congresses; Consensus; Data; Data Linkages; Databases; Diagnostic; Dimensions; Economics; Education; Environment; Etiology; Expenditure; Health; Health Expenditures; Health Services; Heart; Heterogeneity; High Prevalence; Home Care Services; Hospital Mortality; Hospitals; Income; Individual; Inpatients; Institution; Insurance; International Classification of Disease Codes; Intervention; Investigation; Leadership; Length of Stay; Link; Low income; Machine Learning; Measures; Mediator of activation protein; Medicaid; Methodology; Methods; Minority; Modeling; Morbidity - disease rate; Neighborhoods; New York; Operative Surgical Procedures; Outcome; Outpatients; Patient Care; Patients; Perioperative; Pharmacy facility; Physiology; Policies; Population; Positioning Attribute; Privatization; Provider; Race; Records; Registries; Rehabilitation therapy; Reporting; Research; Research Personnel; Resources; Risk; Surgeon; Techniques; Testing; Time; Translating; United States; abstracting; acute care; care costs; college; congenital heart disorder; cost; data registry; disorder subtype; follow-up; health care availability; health care service; health inequalities; high risk; indexing; mortality; neighborhood disadvantage; neonatal surgery; novel; pediatric cardiologist; population based; repaired; risk stratification; social determinants; social health determinants; years of life lost

Project Summary Congenital heart defects are the most common and resource intensive birth defects managed in the United States with high morbidity and mortality. They are estimated to effect over 1 million US children and 1.4 million US adults and to result in ~200,000 life-years lost and >$6 billion in inpatient acute care costs per year. Significant disparities are known to exist in short-term outcomes and resource utilization. We have shown that children from low income neighborhoods have 18% higher risk-adjusted odds of in-hospital mortality, have 7% longer lengths-of-stay, and require 7% more perioperative resources than do children from higher income neighborhoods, even after controlling for the effects of race, public versus private insurance provider, and the hospitals at which these children ultimately receive surgical repair. Research on long-term outcomes and health expenditures is limited and mechanisms driving health inequities remain unknown. Greater than 50% of children with congenital heart disease are covered by Medicaid. We have partnered with the NY Department of Health and have clean, validated data for all Medicaid patient encounters over 15 years across NY State. We have developed methods of abstracting and linking locally-held clinical registry data to Medicaid files and have built an interdisciplinary team of pediatric cardiologists, cardiac surgeons, health services researchers, health economists, and NY Department of Health senior leadership to identify dimensions of healthcare access that could be targeted through center- or state-level interventions to reduce inequities. We propose linking pediatric cardiac surgical clinical registry data from across NY State, longitudinal Medicaid claims, Census Bureau data, geocoded data, and the National Death Index. We will use these data to accomplish the following Aims: 1) We will define 10-year risk-stratified, multi-dimensional outcomes (mortality and morbidities) and associated health expenditures for children undergoing congenital heart surgery across New York State; 2) we will develop novel longitudinal risk models for children with congenital heart disease that adjust for social determinants of health, and 3) we will test dimensions of healthcare access as modifiable drivers of health inequities among children in New York with congenital heart disease on Medicaid. Achieving our aims would 1) establish a comprehensive, population-based resource for longitudinal outcomes and health expenditure research, inclusive of not only in-patient data, but also out-patient, emergency room, pharmacy, rehabilitation, home healthcare, education records, and neighborhood-level social determinants of health for nearly half of all children undergoing congenital heart surgery in NY State, 2) generate a methodology for investigations on long-term outcomes and value applicable across multiple populations, 3) assess constructs of access as modifiable mediators of social determinants of health, and 4) position us to translate these findings into policy and care changes to reduce health inequities.

项目摘要 先天性心脏缺陷是统一管理的最常见和资源密集的先天缺陷 发病率和死亡率高的国家。据估计，它们将超过100万儿童和140万 美国成年人，每年损失了约20万年的生命年，每年的住院急性护理费用均为60亿美元。 已知有明显的差距在短期结果和资源利用中存在。我们已经表明 来自低收入社区的儿童的风险调整后死亡率增加了18％，患有7％ 与来自收入更高的儿童相比，停机时间更长，需要围手术期资源7％ 即使在控制种族的影响之后，公共保险提供商以及 这些孩子最终接受手术修复的医院。研究长期结果和 健康支出是有限的，驱动健康不平等的机制仍然未知。大于50％ 先天性心脏病的儿童被医疗补助覆盖。我们已经与纽约部门合作 健康，并拥有在纽约州15年内所有医疗补助患者遇到的清洁，经过验证的数据。 我们已经开发了将本地控制的临床注册表数据抽象和链接到医疗补助文件和 已经建立了一支由儿科心脏病专家，心脏外科医生，卫生服务研究人员组成的跨学科团队， 卫生经济学家和纽约州卫生部高级领导局确定医疗保健方面的方面 这可以通过中心或州级干预措施来降低不平等。我们建议链接 来自纽约州的小儿心脏手术临床注册表数据，纵向医疗补助索赔，人口普查 局数据，地理编码数据和国家死亡指数。我们将使用这些数据来完成 以下目的：1）我们将定义10年风险分层的多维结果（死亡率和病态） 以及针对纽约州先天性心脏手术的儿童的相关健康支出； 2）我们将为患有先天性心脏病的儿童开发新的纵向风险模型，以适应社会 健康的决定因素，以及3）我们将测试医疗保健访问的维度作为可修改的健康驱动因素 纽约儿童的不平等患有先天性心脏病。实现我们的目标 1）为纵向结果和健康支出建立全面的，基于人群的资源 研究不仅包括住院数据，还包括门诊，急诊室，药房，康复， 近一半 在纽约州接受先天性心脏外科手术的儿童，2）生成一种调查方法 长期成果和价值适用于多个人群，3）评估访问构造为 可修改健康的社会决定因素的可修改者，4）将这些发现转化为政策 和护理改变以减少健康不平等。