Key result
Collaborative multicenter research efforts are necessary to better characterize outcomes and improve care for pediatric congenital heart disease survivors.
Highlights the importance of collaborative multicenter research and technological advancements to improve long-term outcomes for pediatric congenital heart disease survivors.
Evidence gaps limit long-term management of pediatric CHD survivors; multicenter studies are needed to address them.
Appreciating the complexity and evolving pathophysiology after palliation of CHD is critical to improving the outcome. Despite a growing patient population because of greater survival over the years, detailed data on the long-term outcomes of these patients is surprisingly sparse. The establishment in 2001 of the Pediatric Heart Network by the National Heart, Lung and Blood Institute has provided a collaborative multicenter platform to conduct large trials in CHD and to characterize outcomes. This chapter has emphasized how CHD care spans the continuum from fetal life to adulthood. Current research efforts aspire to better characterize short-term and long-term outcomes, continue advancement of technologies to better diagnose and treat CHD, and to elucidate the role of genetics and biomarkers in predicting outcome. Focused studies on variations in perioperative practice and quality will help us provide better clinical outcomes for CHD survivors.
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Lin et al. (2012) conducted a review in Pediatric Congenital Heart Disease. Collaborative multicenter research efforts are necessary to better characterize outcomes and improve care for pediatric congenital heart disease survivors.
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