The National Pediatric Cardiology Quality Improvement Collaborative (NPC-QIC) is a learning health network of more than 70 pediatric cardiology centers that, through a strong partnership with Sisters-by-Heart, a parent advocacy group, work to decrease mortality and improve quality of life for infants with single ventricle congenital heart disease and their families. NPC-QIC’s registry of infants with hypoplastic left heart syndrome (HLHS) is the largest in the world with more than 2,100 patients. NPC-QIC highlights span improvement, innovation and discovery.
NPC-QIC’s phase I work focused on improving outcomes for infants with HLHS during the interstage (between discharge from the initial open-heart surgery and admission for a bi-directional Glenn procedure). Phase I has been transformational for the field, both because of the improvements accomplished to date and because of the development of a parent, clinician and scientist community to broadly disseminate successful improvement strategies. To date, the network’s patients who are discharged home between stage 1 and stage 2 surgeries have a 95 percent chance of surviving the interstage period, 87 percent of whom have satisfactory growth during the interstage period. Since July 2013, the interstage mortality rate across centers participating in NPC-QIC has fallen by 49 percent; this reduction in the mortality rate from July 2013 is estimated to represent over 110 lives saved (and counting). This is the equivalent of four classrooms of kindergartners! NPC-QIC has also developed a bundle (or set of changes) that has improved growth outcomes in infants prior to their second open-heart surgery.
In 2016, NPC-QIC launched phase II of its work, expanding the scope of its improvement and research efforts from the interstage period to the interval between diagnosis and celebration of the first birthday for HLHS patients. NPC-QIC’s phase II work utilizes a learning and improvement framework consisting of three levels of projects: Path 1, Path 2 and Path 3. These path projects provide participating Care Centers with a variety of opportunities for quality improvement work at their local site, within multiple sites and across the entire collaborative. Active projects include: Gross Motor Development, Preoperative Feeding, Unplanned Reinterventions, Health Equity, Tube Weaning and Surgical Coaching.
Learn more about the National Pediatric Cardiology Quality Improvement Collaborative.