QUALITY – Heart malformation

Congenital heart defects affect >1 in 100 children (60 times more common than cancer). They increase the risk of hospitalization by 20 times and are responsible for 4 % of all hospital admissions in children. Research in congenital heart defects is challenging: the defects are heterogeneous and each is relatively rare; easily measured clinical outcomes (such as mortality) are infrequent; and complications can occur decades after an intervention.

Patient-reported measurements (PRMs), such as quality of life, are critical to advancing the care of children with heart disease. The goal of this project is to develop and implement a PRM collection platform to integrate quality of life data with existing databases. We want to take advantage of the strong sense of community that exists among families of children with heart disease to help disseminate and share the study link for participation at home.