National pediatric cardiology quality improvement collaborative: Lessons from development and early years

The National Pediatric Cardiology Quality Improvement Collaborative (NPC-QIC) was established by the Joint Council on Congenital Heart Disease to dramatically improve the outcomes of care for children with congenital heart disease (CHD) through a national collaborative network of multidisciplinary clinical teams and families, working together to collect longitudinal data, use improvement science methods and conduct research intended to accelerate the development and translation of new knowledge into practice. The initial project selected for this learning network is focused on care processes and outcomes of the initial interstage period for infants with hypoplastic left heart syndrome. A practice-based registry is being used to understand variation in care and outcomes of infants and children with complex CHD. The NPC-QIC has effectively recruited and engaged a large number of U.S. centers caring for infants with complex CHD and provides the infrastructure needed to support the implementation of practice changes across the collaborative that will ultimately improve outcomes in this high-risk group of patients. We describe here the development and early years of NPC-QIC as well as the challenges this collaborative faces moving forward.