What do you get when a team of pediatric cardiologists, nurses, cardiac intensivists, congenital heart surgeons, quality improvement experts, and parents of children with congenital heart disease (CHD) from across the country come together? You get a unique opportunity to dramatically improve outcomes of care for children with cardiovascular disease.

Over the last few years, the National Pediatric Cardiology Quality Improvement Collaborative (NPC-QIC), working with its partnering organization Sisters by Heart, has focused on building a quality improvement and learning network focused on improving survival and quality of life of infants with hypoplastic left heart syndrome (HLHS) during the “interstage” period between discharge from Stage 1 Norwood and admission for Stage 2 bidirectional Glenn procedure.

According to Robert Beekman III, MD, FACC, chair of NPC-QIC and chair of the ACC’s Adult Congenital and Pediatric Cardiology Section, this network of 55 pediatric cardiology centers in 33 states and the District of Columbia, has evolved into a robust forum for sharing challenges, identifying successful care strategies, and testing research hypotheses. “Having pediatric cardiology clinical care teams, researchers and families work together is a novel concept – and one that is clearly working,” he said. “The valuable insights that have been gained already make us extremely optimistic about our chances of making real improvements in care and outcomes for the patients and families who entrust their children’s lives to these dedicated teams.”

Beekman notes that the NPC-QIC registry, in particular, has become a valuable source of data for a growing amount of clinical research related to HLHS. An August 2014 study published in Pediatric Cardiology, for example, provided a closer look at links between site of interstage care, resource utilization and interstage mortality. Study investigators found no differences in the rates of death or the reasons for death among patients receiving interstage care at the surgical site (60 percent), a non-surgical site (17 percent) or at a combination of sites (21 percent). However, patients receiving care at the surgical site were more likely to have emergency room visits and readmissions, while patients at a non-surgical site or at a combination of sites were more likely to have problems identified with breathing and/or feeding.

Recently, stakeholders involved in the NPC-QIC project met in Chicago, IL, to begin defining the next steps to collaboratively improve care for vulnerable HLHS patients. During the meeting, participants discussed ways to optimize fetal and perinatal management, optimize pre-operative intensive care, identify best surgical management strategies, and optimize post-operative intensive care. Focused workgroups were formed to identify potential improvement activities in fetal and perinatal management, intensive care unit (ICU) care, surgical care, post-operative ICU management and developmental needs.

Stacey Lihn, a parent of a patient with HLHS and president of Sisters by Heart, was an active participant in the meeting, and believes that the unique involvement of families and a focus on patient and family quality of life will help this project succeed. “Parent input is playing an extremely important role in this design phase – as improving the quality of life for families is of utmost importance to both practitioners and families,” she said. “While the team involved in shaping the HLHS project realizes that improving best practices for health care delivery is important, there is great need to weave family quality of life improvement strategies into every aspect of care and treatment.”

Moving forward, Lihn notes that, “We are increasingly seeing centers that involve parents and families in many of their activities can achieve tangible improvements in care, processes and outcomes. This will only continue as the NPC-QIC project grows.”

For more information on the project, visit JCCHDQI.org. More information on Sisters by Heart is available at Sisters-by-Heart.org.

Keywords: Cardiology Magazine, ACC Publications

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