Congenital heart defects have long posed great risks for the 2.5 million Americans who currently live with them. Now this most common of birth defects has become the focus of an innovative research model that could mean a brighter, healthier future for many children born with this often life-threatening condition. The model, which already has been successfully implemented in healthcare centers across the country, was developed by the Pediatric Heart Network, a cooperative research effort between leading medical centers and the National Heart, Lung, and Blood Institute (NHLBI), part of the National Institutes of Health.
Congenital heart defects are problems with the heart’s structure that show up at birth, and they range from holes in the heart to leaky heart valves. More than a quarter of the 40,000 newborns with the condition will require surgery during their first year of life to survive. A lack of standard guidelines for pre-, intra-, and post-surgical care has resulted in inconsistencies in surgical outcomes among different healthcare centers.
To address this problem, the NHLBI’s Pediatric Heart Network partnered with the Georgia Institute of Technology to create and implement clinical practice guidelines based on detailed onsite observations of surgical care at five leading U.S. pediatric centers. By analyzing the best clinical practices among these pediatric centers—an approach dubbed “collaborative learning”—and applying complex mathematical analyses to the data they obtained at the site visits, the researchers identified significant factors influencing surgical outcome for congenital heart defects. They published the results of the study in Pediatric Critical Care Medicine.
The resulting guidelines have enabled patients to be removed from breathing apparatuses earlier and decreased the time patients needed to remain in the intensive care unit for those with tetralogy of Fallot, a common congenital heart defect that causes decreased blood oxygen levels and is often surgically repaired in the first year of life. Shorter times for mechanical ventilation have meant that infants can be fed by mouth sooner and have fewer opioid-based pain medications, the researchers said. In addition to improved clinical outcomes, the guidelines also have helped reduce medical costs an estimated 27 percent, or nearly $13,500 per patient following surgery for tetralogy of Fallot, the researchers said.
“The collaborative learning model allowed us to very rapidly transmit and disseminate an innovative and beneficial practice from one medical center to several other centers,” said study co-author Dr. William T. Mahle, Professor of Pediatrics at Emory University School of Medicine in Atlanta and CEO of Sibley Heart Center Cardiology. What’s most promising, said Mahle, is that the model is increasingly being adopted throughout the field of pediatric cardiac care.
In recognition of these accomplishments, the Pediatric Heart Network was recently nominated for the 2018 Franz Edelman Award, which recognizes and rewards outstanding contributions of analytics and operations research in for- and non-profit sectors around the globe. The award is administered by INFORMS, the leading international association for operations research and analytics professionals.
“To be nominated for the Franz Edelman Award, which recognizes the greatest achievements in operations research and analytics, is an incredible testament to the hard work and dedication of Pediatric Heart Network investigators and our operations research collaborators,” said Dr. Gail Pearson, Associate Director of the Division of Cardiovascular Sciences at NHLBI, which oversees the Pediatric Heart Network. “We are tremendously honored that our application of operations research to improving the lives for patients with congenital heart defects has had such an impact.”
The “collaborative learning” tool is just one many contributions NHLBI is making to help people with congenital heart disease. NHLBI also funds the Pediatric Cardiac Genomics Consortium as a companion effort to advance precision medicine activities, such as identifying the genetic underpinnings of congenital heart disease. Researchers hope that their efforts will lead to better ways to prevent or treat the condition.