Racioethnic and Socioeconomic Impact on Outcomes in Pediatric Cardiomyopathy

种族和社会经济对小儿心肌病预后的影响

• 批准号: 9763642
• 负责人: LYNN A SLEEPER
• 金额: $ 13.16万
• 依托单位: BOSTON CHILDREN'S HOSPITAL
• 依托单位国家: 美国
• 财政年份: 2018
• 资助国家: 美国
• 起止时间: 2018-08-15 至 2021-07-31
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/9763642
• 关键词: 18 year old; Accounting; Adolescent; Caring; Cessation of life; Child; Childhood; Clinical; Collaborations; Consult; Data; Death Rate; Diagnosis; Dilated Cardiomyopathy; Disease; Education; Ensure; Ethnic Origin; Ethnic group; Funding; Gender; Genetic; Genetic Markers; Geography; Health; Health Insurance; Health Policy; Healthy People 2010; Heart; Heart Diseases; Heart Rate; Heart Transplantation; Household; Incidence; Income; Infant; Institute of Medicine (U.S.); Insurance Coverage; Lead; Measures; Methodology; Minority Groups; Morbidity - disease rate; National Heart, Lung, and Blood Institute; Neighborhoods; Not Hispanic or Latino; Outcome; Patients; Pediatric Cardiomyopathy; Persons; Play; Population; Race; Recording of previous events; Registries; Reporting; Research; Research Personnel; Residual state; Risk Factors; Role; Severity of illness; Socioeconomic Status; Transplantation; United States Dept. of Health and Human Services; base; cohort; cooking; design; effective intervention; functional status; health application; health care quality; health care service utilization; health difference; health disparity; health related quality of life; improved; longitudinal database; low socioeconomic status; mortality; novel; post-transplant; racial and ethnic; residence; secondary analysis; sociodemographics; socioeconomics; symptomatology

Project Summary Heart disease is a leading cause of disease-related mortality in childhood. A major contributor is dilated cardiomyopathy (DCM), with nearly one-third of patients dying or receiving a heart transplant in the first year following diagnosis, and almost half within 5 years. While the genetic basis for pediatric DCM is increasingly recognized outside of cardiac transplantation, few options exist for children suffering from this devastating disease, exemplifying the clinically unmet need to better understand the factors related to outcomes for children with DCM and develop more effective interventions. While some of the key correlates are clinical, sociodemographic factors may also play a role. The National Heart, Lung and Blood Institute-sponsored Pediatric Cardiomyopathy Registry (PCMR), which began in 1994, and its later genetic and biomarker studies contain data on approximately 4,000 cases of cardiomyopathy in children and adolescents of which over half are cases of DCM. The PCMR enterprise offers a rich, longitudinal database, and contains key information that will allow us to evaluate racioethnic disparities in health outcomes for this population that is characterized by high mortality, morbidity and health care utilization. The specific aims of the proposed research are 1) To describe, according to racial/ethnic group, clinical outcome rates of heart transplant listing and the composite of death and heart transplant, as well as the classes of measures used to evaluate health disparities, including socioeconomic status (SES), insurance status, severity of disease based on symptomatology echocardiographic profile, functional status and health- related quality of life, and geography; 2) To determine the association between SES and clinical outcomes, and the relative impacts of race/ethnicity and SES; and 3) To estimate the magnitude of racioethnic disparities in clinical outcomes, utilizing two different constructs of health disparity, i.e., according to Healthy People 2010 and the Institute of Medicine (2003). The proposed project has several novel features including the application of health care utilization methodologies to health outcomes to examine racioethnic disparities; the use of geocoding to determine neighborhood-level SES; and implementation of statistical methodologies specifically designed for disparities research. The proposed research team of Drs. Sleeper, Wilkinson and Lipshultz, with Dr. Zaslavsky consulting, in conjunction with PCMR investigators, has a long history of productive collaboration and they possess the clinical and statistical expertise to successfully execute this project to identify racioethnic disparities in the clinical outcomes of children with DCM.

项目摘要 心脏病是儿童期疾病相关死亡的主要原因。一个主要的贡献者是扩张的 心肌病（DCM），近三分之一的患者在第一年死亡或接受心脏移植 确诊后，近一半在5年内。虽然儿童扩张型心肌病的遗传基础越来越多， 除了心脏移植外，患有这种毁灭性疾病的儿童几乎没有选择。 疾病，举例说明临床上未满足的需要，以更好地了解与结果相关的因素， 与DCM的儿童，并制定更有效的干预措施。虽然一些关键的相关性是临床的， 社会人口因素也可能发挥作用。国家心肺血液研究所赞助 1994年开始的儿童心肌病登记（PCMR）及其后来的遗传学和生物标志物研究 包含大约4,000例儿童和青少年心肌病病例的数据，其中一半以上 都是扩张型心肌病PCMR企业版提供了一个丰富的纵向数据库，其中包含关键信息 这将使我们能够评估这一人群在健康结果方面的种族差异， 高死亡率、发病率和卫生保健利用率。 拟议研究的具体目的是：1）根据人种/种族组描述临床 心脏移植登记的结局率和死亡与心脏移植的复合终点，以及 用于评估健康差异的措施类别，包括社会经济地位（SES），保险 基于心脏病学超声心动图特征的疾病状态、严重程度、功能状态和健康状况- 相关生活质量和地理位置; 2）确定SES与临床结局之间的关联，以及 种族/民族和社会经济地位的相对影响; 3）估计种族/民族差异的程度， 临床结果，利用两种不同的健康差异结构，即，根据2010年健康人 和医学研究所（2003年）。拟议的项目有几个新的特点，包括应用程序 卫生保健利用方法的健康结果，以审查种族-民族差异;使用 地理编码，以确定邻里一级的社会经济地位;以及实施统计方法，特别是 为研究差异而设计。由Sleeper、威尔金森和Lipshultz博士组成的拟议研究小组， 博士Zaslavsky咨询公司与PCMR调查人员合作， 他们拥有临床和统计专业知识，能够成功地执行这个项目， DCM患儿临床结局的差异。