The largest comprehensive study of congenital heart disease (CHD) to date has revealed that, despite an overall decline in mortality over the past few decades, a child’s odds of surviving a CHD diagnosis hinge on the economic health of their community.
The research, funded by the Bill & Melinda Gates Foundation and authored by a research group known collectively as the GBD 2017 Congenital Heart Disease Collaborators, was rooted in data from the 2017 Global Burden of Diseases, Injuries and Risk Factors Study (GBD). The authors wrote in The Lancet that accurate assessment of the absolute and relative burden of CHD is key to optimizing resources and care, and until now estimates have fallen short.
“Previous publications have estimated 250,000 annual CHD deaths globally, 1.35 million annual births of neonates with CHD globally and 2.4 million people living with CHD in the U.S.A. alone,” the team wrote. “However, even the global studies were generated from a small number of geographically limited sources, included only broad categories of congenital heart disease and did not comprehensively evaluate CHD throughout the lifecourse, instead relying on strong assumptions about their distribution and natural history.”
The collaborators used 2017 GBD data to more comprehensively classify CHD, grouping cases anatomically by type rather than just “moderate,” “severe” or “critical.” They also broadened their base by including newer data sources and registries and implemented a control mechanism to account for cases of CHD that remit on their own.
Upon analysis, co-author Craig Sable, MD, and colleagues on the writing committee noted a 34.5% decline in deaths from CHD between 1990 and 2017. They estimated that nearly 12 million people are living with CHD today, though—18.7% more than in 1990.
The team reported that almost 70% of the 180,624 deaths caused by CHD in 2017 were in infants less than 1 year old, and the majority occurred in low- or low-to-middle-income communities. The higher a country’s socio-demographic index (SDI), the lower that country’s CHD mortality rates.
Sable et al. said birth prevalence of CHD wasn’t related to a country’s socio-demographic status, but overall prevalence of the disease was much lower in the world’s poorest countries. The authors said that’s because kids in those regions don’t have access to the same life-saving surgeries as children in higher-income countries, like the U.S. or U.K.
“For children born in middle- and low-income countries, these data draw stark attention to what we as cardiologists already knew from our own work in these countries—the lack of diagnostic and treatment tools leads to lower survival rates for children born with CHD,” Sable, associate chief of cardiology at Children’s National Hospital, said in a statement. “This is one of the most significant publications I have been a part of as it highlights the substantial loss of life to CHD in infancy around the globe.”
The team said that moving forward, policymakers will need to focus on developing “specific accountability measures” to address barriers to CHD treatment and improve access to quality care.
After graduating from Indiana University-Bloomington with a bachelor’s in journalism, Anicka joined TriMed’s Chicago team in 2017 covering cardiology. Close to her heart is long-form journalism, Pilot G-2 pens, dark chocolate and her dog Harper Lee.