Pediatric Congenital Heart Disease: A Total Population Story

JACC in a Flash | Use of pediatric cardiology specialty care centers has increased dramatically over the last few decades, according to a new study in JACC examining regionalized care for pediatric congenital heart disease (CHD) in California.

Advancements in treatment have improved the outcomes for children born with CHD, leading to an increasing number of patients who need ongoing care. Additionally, addressing disparities in care for these patients is a priority—access to care for CHD patients has been shown to vary between white and non-white patients, as well as between different types of insurance.

Lisa J. Chamberlain, MD, MPH, and colleagues examined how the utilization of regional care center for pediatric cardiac care has evolved over the last 30 years. During this time, there has been growth of public insurance programs and the introduction of managed care models.

The authors examined regional pediatric cardiology specialty care center (PCSCCs) in California between 1983 and 2011. The analysis included 164,310 pediatric CHD discharges from these centers, with 70% of discharges being associated with a surgical procedure and 30% associated with hospitalization without surgery.

During the study period, regionalization of pediatric CHD care increased—58% of discharges in 1983 were from a PCSCC, while that number jumped to 88% in 2011. Regionalization of surgical cases also grew from 61% in 1983 to 96% in 2011. For non-surgical cases, regionalization grew from 48% in 1983 to 71% in 2011. However, in 2002, rates of regionalization for both surgical and non-surgical discharges plateaued. The researchers also found an increased demand on inpatient care for CHD patients with bed days increasing from 35,753 at the start of the study period to 71,278 at the end—a 199% increase. This change was seen even when adjusted for child population growth. However, PCSCC bed day increased from 22,949 in 1983 to 65,189 in 2011, while bed days in non-specialty care centers declined from 12,804 to 6,089 during the same period.

During this time, there was also a shift in payer status. In 1983, there was an equal split between public and private payers in both specialty and non-specialty sites. In 2011, however, 66% of all pediatric CHD bed days were covered by public programs and 96% of those were cared for in specialty hospitals.

Finally, death rates from CHD decreased by 45% during this period. In 1983, 70% of death occurred during surgery, while that number fell to 57% in 2011. According to the authors, “As outcomes for pediatric patients with CHD are improved in high volume centers, further work needs to explore policy opportunities to recapture the upward trend of regionalized care.” Increased survivorship of pediatric CHD patients has contributed to the increased utilization of PCSCCs.

“The advances and emerging epidemiology of congenital heart disease have engendered new demands on systems of care, requiring increased specialization across a wide range of multidisciplinary teams found in regionalized centers, where volume leads to improved quality,” the authors write. “With these shifts have emerged other patterns: in California, deaths are increasingly associated with medical versus surgical admissions, echoing the literature describing that survivors succumb more often to medical conditions that surgical problems, and elevating the concerns that regionalized care lags for non-surgical admissions compared to surgical admissions.”

Over the study period, California PCSCCs increased in both volume and financial instability. With more children covered by Medicaid, PCSCCs are seeing an increased number of bed days covered by public payers. PCSCCs are therefore more dependent on public reimbursement rates and funding for PCSCCs have become increasingly vulnerable to policy shifts.

In an accompanying editorial comment, Roberta G. Williams, MD, writes that the work by Dr. Chamberlain and her colleagues is a step forward in understanding demographic and environmental changes in the CHD population and planning future resource requirements. “As each decade has brought innovation that has increased survival of the marginally viable, it is likely that the pattern of health service utilization will be quite different when today’s child with CHD becomes an adult,” she said. “Recent cohorts of CHD patients will require increasingly more services throughout their lives… [We must] strive to find the most efficient and low-cost strategies to provide the best value for the patient and to society.” She adds that a continuing effort must be made to provide the best health outcomes over a lifetime and to innovating new strategies that simplify care and its cost.


Chamberlain LJ, Fernandes SM, Saynina O, et al. J Am Coll Cardiol. 2015;66(1):37-44.

Clinical Topics: Congenital Heart Disease and Pediatric Cardiology, Congenital Heart Disease

Keywords: CardioSource WorldNews, ACC Publications, Heart Defects, Congenital, Pediatrics


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