Racial disparities in congenital heart disease

Racial disparities in pediatric health and health care in the United States and other countries are well documented but grossly under investigated. For example, African American infants have a 2.4-fold greater first year mortality rate than non-Latino White (White) infants (1). This long-standing racial disparity has been documented for decades, but only limited data suggest it is partly due to the greater rates of preterm birth, low birth weight, and intrauterine growth retardation among African American infants. Although congenital heart disease (CHD) is relatively rare, accounting for only 0.2%–0.6% of live births (2), these infants account for 20% of neonatal deaths (3). African American infants with CHD experience the same disparities as African American infants without CHD, resulting in an increased risk of mortality relative to Whites (4). Among children with single-ventricle lesions, African Americans have a 41% higher mortality rate than Whites (5), and this disparity persists after accounting for risk status and family income (6). In addition, improvements in health care have not benefited all groups equally; since 1979, CHD mortality rates declined by 2.7% among Whites but only by 2.1% among African Americans (7). Despite these persistent disparities, few studies have evaluated the mechanisms that underlie racial/ethnic disparities in infant mortality due to CHD. Furthermore, our understanding of ethnic disparities in other ethnic groups, like Latinos and Asians, is extremely limited, despite the increasing diversity of the U.S. population. In this issue of Pediatric Critical Care Medicine, Ingaramo and colleagues (8) begin to evaluate why these disparities persist within the CHD population. Using a national intensive care unit database (Virtual Pediatric Intensive Care Unit Systems), Ingaramo and colleagues collected results from 29 institutions between 2006 and 2008. They hypothesized that ethnic disparities in surgical outcomes among patients with CHD are related to the quality of health care and evaluated the timing of repair in 423 children with single-ventricle physiology. They anticipated that African American infants and children would undergo surgical repair at older ages than Whites. Contrary to their hypothesis, they did not find a difference in the timing of Glenn or Fontan procedures between African American and White children (8). While the Latino children in the study tended to undergo surgical repair at later ages than Whites or African Americans, the differences were not statistically significant. However, 20.5% of the children in the database were reported as “other” ethnicity (13.2%), or information about ethnicity was missing (7.3%), which limits the utility of this database for assessment of ethnic disparities. Despite these shortcomings, Ingaramo and colleagues have provided evidence against ethnic disparities in the use of resource-intensive services for repair of CHD among African American and White infants. The findings from the present study conflict with an earlier study by Milazzo et al (9) that focused on a single institution from 1997–2000. Milazzo et al (9) reported that African American children underwent bidirectional Glenn repair at a median age of 11 months, which was significantly later than White children (median age of 5 months). Similarly, African American children underwent the Fontan operation at a median age of 60 months, which was much later than White children (36 months) (9). Milazzo et al (9) reported that these racial disparities persisted after adjusting for insurance status and family income. In comparing the Milazzo study and the study by Ingaramo and colleagues, it is important to note that Ingaramo et al did not adjust for several important sociodemographic variables (10–13). In an earlier study, Chang et al (14) reported that children with private insurance underwent earlier repair of congenital heart lesions than children with public insurance, even within the same institution, underscoring the importance of adjusting for sociodemographic characteristics. Similarly, in a large study of patients, Gonzalez et al (15) noted persistent racial disparities in mortality rates due to CHD after adjusting for insurance status and risk assessment scores. Although the study by Ingaramo and colleagues analyzed data that were collected from 29 institutions, the nature of the data collection process may have masked institutional and regional differences that contribute to surgical decision making, including the timing of surgery. Indeed, a prior study found that racial disparities and mortality rates varied significantly by region (15). Nonetheless, the results reported by Ingaramo and colleagues suggest that there have been improvements in surgical outcomes for African American and White children with CHD. Further study is needed to understand whether there are ethnic disparities for Asian or Latino children, and to elucidate the impact of sociodemographic risk factors. Although it seems counterintuitive, comprehensive analyses from single institutions may be better suited to address the question of disparities in disease management or outcomes. To optimize the health of all children, we must continue to address the pervasive problem of racial disparities in health and health care, appreciate the unique methodological challenges associated with its investigation, continue to optimize methodological strategies for its investigation, and evaluate implemented interventions. The previous study by Milazzo et al (9) and the current study by Ingaramo et al (8) provide a nice beginning of a long journey to accomplish these goals for the treatment of CHD. Gayle Soskolne, MD Department of Pediatrics University of California, San Francisco San Francisco, CA James W. Collins Jr., MD Department of Pediatrics Northwestern University Chicago, IL Jeffrey R. Fineman, MD Department of Pediatrics University of California, San Francisco San Francisco, CA Elena Fuentes-Afflick, MD, MPH Departments of Pediatrics and Epidemiology and Biostatistics University of California, San Francisco San Francisco, CA