Published June 9, 2015
Circulation: Cardiovascular Quality and Outcomes

Newborns with hypoplastic left heart syndrome (HLHS) need open-heart surgery shortly after birth, then a second several months later, and a third several years later. Yet after the initial operation, 10 to 15 percent of babies never make it to the second surgery.

That high-risk interstage timeframe became the focus of a multi-institutional learning network supported by the Anderson Center. The network brings together parents, clinicians, and researchers to improve outcomes by sharing research and quality improvement data.

This network involves 60 U.S. pediatric cardiology centers that participate in the National Pediatric Cardiology Quality Improvement Collaborative (NPC-QIC).

The study, published June 9, 2015, was led by Jeffrey Anderson, MD, MPH, chief quality officer at the Heart Institute; and senior author Carole Lannon, MD, MPH, director of Learning Networks at the Anderson Center.

“Networks are the best way to improve outcomes for populations of patients at scale,” says Lannon, “especially for those with a rare disease.”

Researchers analyzed data on 1,163 infants from 52 surgical centers. This included 1,050 who completed the interstage with second-surgery palliation, 18 who underwent transplantation during interstage, and 95 who died during interstage.

The team found improvements in survival rates over time, despite no clear changes in medications or therapy strategies. The key: clinical care centers learning from each other and families, testing strategies, and developing reliable care processes.

“While the improvement in mortality, with no new surgical or cardiac interventions, is important to our field,” Anderson says, “just as important is the proof that cardiac centers can come together, collaborate, and improve outcomes by sharing practices."