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.
As emphasized in reports from the U.S. Department of Health and Human Services, the Institute of Medicine, and the National Heart, Lung and Blood Institute, the identification of health disparities or differences based on race, ethnicity, household income and education, health insurance and other factors is vital to ensuring access to quality health care and to optimize health outcomes. The purpose of this project, ?Racioethnic and Socioeconomic Impact on Outcomes in Pediatric Cardiomyopathy?, is to look at whether factors such as race, ethnicity, and socioeconomic level are related to health outcomes for children with dilated cardiomyopathy. Our results could lead to new research into ways to decrease or eliminate health disparities and improve health outcomes in these children, 40% of whom currently die or need a heart transplant within 2 years of diagnosis.
