Public Health Approach to Improve Outcomes for Congenital Heart Disease Across the Life Span

Abstract

C ongenital heart disease (CHD), which is present in around 1.0% (1 in 110) of all live births in the United States, is the most common birth defect. [1][2]2][3][4][5] Defined generally as malformations present at birth that involve the heart or major associated blood vessels, CHD includes a remarkably heterogeneous group of chronic conditions, with very different phenotypes, prevalence, risk factors, and outcomes.CHD is a significant contributor to birth-defect-related morbidity, mortality, and healthcare costs 6 in early life and increasingly among adolescents and adults. 7Because of their broad impact at the population level, a public health approach is needed to address the challenges of these common, critical, and costly conditions. 8We sought to create a framework to address CHD from a population-based perspective, to serve as a model for a public health agenda for the United States, with a goal of improving the lives of those with or at risk for CHD.This framework is complementary to previous work outlining the Centers for Disease Control and Prevention's scientific priorities related to CHD, 9 because implementation strategies are also needed in addition to addressing gaps in scientific knowledge. [9][10]][11] The CHD framework is a public health model for addressing disease at the population level, which emphasizes monitoring, interventions, and optimizing outcomes at the population level.Core components of a public health model are: (1) identifying or monitoring the occurrence and outcomes of a condition over time and among different subgroups in the population; (2) investigating factors that impact occurrence and outcomes, specifically causes of disease and modifiers of prognosis; (3) developing interventions and policies to reduce risks and improve outcomes; (4) implementing interventions and policies; and (5) evaluating the effectiveness of such interventions and policies. 12These components are interconnected in that improvements in each component lead to improvements in the entire framework and success in addressing public health challenges.The main features of the public health framework for CHD, presented in language appropriate for a lay audience, have three key pillars: Identify and Investigate, Develop Interventions and Policies, and Implement and Evaluate (Figure 1).The scope encompasses everyone at risk for CHD or living with CHD to underscore the need for equitable and universal access to care delivery and services.In the following sections, components are discussed, along with key issues identified by the Congenital Heart Public Health Consortium (CHPHC) for improved outcomes.Key opportunities to advance a public health agenda for CHD are listed (Table 1).