Perspective: Large-Scale Studies Are Needed To Address Pediatric Heart Failure

By Shahnawaz Amdani, MD

As a clinician caring for children with heart failure, it is disheartening that the science of pediatric heart failure has not advanced and accelerated at a rate comparable with adult heart failure. There are numerous large-scale adult heart failure studies that have researched epidemiology and, subsequently, risk factors, outcomes, and therapies to improve outcomes for these patients.

Unfortunately, large-scale epidemiological studies are lacking in the field of pediatric heart failure. These epidemiological studies are an important first step to understanding the burden of this deadly disease before we can develop measures to treat it. A monumental methodological challenge for me was “How do we capture the true burden of this illness in a comprehensive manner?”

Collaborating with population health researchers

To conduct this important analysis, I sought the expertise of Cleveland Clinic’s Center for Population Health Research. They helped me tremendously by designing the study and conducting rigorous statistical analyses required to complete such a large-scale epidemiological study.

We had a few important aims: A. Describe the burden of heart failure (both primary and comorbid) across the U.S. healthcare system (in the emergency department, in-hospital admissions, and mortality) in 2012 and 2016. B. Highlight inpatient costs for pediatric patients admitted with heart failure, and C. Compare the burden, resource use, and outcomes for children to adults with heart failure.

Our approach and findings

To do so, we utilized four national registries that captured patients of all ages and insurance statuses with and without heart failure across the U.S. healthcare system in 2012 and 2016.

Our study had several novel and important findings: First, we found that the overall burden of pediatric heart failure is rising. Compared to adults, children with heart failure who came to the emergency department or were hospitalized were at an increased risk for mortality, need for advanced cardiac therapies, such as extracorporeal membrane oxygenation, ventricular assist device and heart transplant, and required increased utilization of resources.

We found that the top three indications for heart failure-related emergency department visits and hospitalizations among children were congenital heart disease, cardiomyopathy, and conduction disorders/arrhythmias.

Finally, children with heart failure had two-fold increased emergency department charges and a 24-fold increased hospitalization charges than children without heart failure, highlighting the burden this illness places on the U.S. healthcare system.

The takeaway message

We evaluated records across the U.S. healthcare system to identify children with and without heart failure and then compared this to health records for adults with heart failure. To my knowledge, such an extensive analysis has never been conducted before in pediatrics. It took us over two years to get this study from inception to publication and required tremendous coordination and collaboration with the statistical team at the Center for Population Health Research.

We are currently conducting additional population health studies to further bridge important knowledge gaps in the field of pediatric heart failure and heart transplant.

About the author: Dr. Amdani is a pediatric cardiomyopathy, heart failure and transplant physician in the Department of Pediatric Cardiology and Assistant Professor of Pediatrics, Cleveland Clinic Lerner College of Medicine at Case Western Reserve University.