Nationally Supported Recommendations to Ensure Access to Quality Care for Children with Congenital Heart Disease

Experts in pediatric cardiac surgery agree: that existing informal referral practices have not been enough to assure that all children with congenital heart defects are consistently receiving optimal care regardless of their hometowns.

That situation may begin to improve after an assembly of 15 national medical societies, led by the Congenital Heart Surgeons’ Society (CHSS), joined together on Sept. 29, 2023, to issue the first new consensus set of quality guidelines issued in years for pediatric cardiac care. The group published their recommendations simultaneously in three leading heart-focused medical journals.

Among many detailed recommendations, the group proposes: 

• A set of minimum capabilities to define “comprehensive” heart surgery centers versus “essential” ones, including a minimum number of at least 200 procedures per year, having at least three heart surgeons on staff, plus a list of high-skill, high-tech support care capabilities available within 60 minutes or less. 
• That all “essential” heart centers develop a relationship with at least one “comprehensive” center that would bring teams together to share case planning and collaborate on follow-up care so that patients receive testing and treatments at the most appropriate locations. These partnerships will increase access to appropriate high-quality care.

EXPERTS WITH CINCINNATI CHILDREN’S PLAY KEY ROLES

Pediatric heart surgeon Carl Backer, MD, was one of the leading architects of the new recommendations. He served as the first author of the documents published on Sept. 29. James Reagor, MPS, CCP, director of cardiac perfusion at Cincinnati Children’s, was a co-author. Former Cincinnati Children’s co-authors included cardiac anesthesiologist James Spaeth, MD, and James Tweddell, MD, who died in 2022.

In his 35-year career, Backer has performed more than 6,000 congenital heart defect repairs. He also served as the CHSS president from 2016-18 where he urged centers to collaborate in more organized ways. Under Tweddell, who succeeded Backer as the society’s president, the effort evolved into a task force formed in 2020 that Backer co-chaired with Sara Pasquali, MD, MHS, with the University of Michigan’s C.S. Mott Children’s Hospital.

“If a family is taking their child to a center, they should know if it’s an essential or comprehensive center. Essential centers shouldn’t be taking on complex patients who need a higher level of care,” Backer says. “Essential services include ‘straightforward’ heart care cases, such as closing atrial and ventricular septal defects, and cath lab procedures like PDA closure and pulmonary valve insertion. It requires more comprehensive services to perform Norwood procedures, VAD procedures, transplants, and other high-risk operations, particularly in neonates. These two types of centers should work together.”

Now, as the recommendations emerge, Backer serves as chief of pediatric cardiac surgery at UK HealthCare’s Kentucky Children’s Hospital, which is part of the Joint Pediatric and Congenital Heart Program, a collaboration with Cincinnati Children’s. Here, he helps lead this working model of the system many heart surgeons want to see established across the country.

ABOUT THE JOINT PEDIATRIC AND CONGENITAL HEART PROGRAM

The Joint Pediatric and Congenital Heart Program was launched in 2017 as a collaboration between Cincinnati Children’s and Kentucky Children’s Hospital. The program, now ranked among the top 10 pediatric heart programs in the country, according to the U.S. News & World Report, has brought a wide range of improvements to heart patients in Kentucky.

The program sends patients to Cincinnati Children’s for highly complex procedures, such as Norwood procedures to repair extreme cardiac defects and implanting ventricular assist devices for children with late-stage heart failure. Meanwhile, it has expanded services available in Kentucky, including a dedicated cardiac operating room and pediatric cardiac intensive care unit, telehealth clinics for families to gain access to top sub-specialty care, and more.

WHAT CHANGES WILL THE NEW RECOMMENDATIONS BRING?

David Morales, MD, executive co-director of the Heart Institute at Cincinnati Children’s, has published extensive research examining the variations in outcomes for children with complex cardiac conditions.

For example, he led an analysis published in 2021 in the Annals of Thoracic Surgery that found wide variation between how programs in the Midwest, West, South, and Northeast treated newborns with a condition called tetralogy of Fallot. The practice variations revealed notable differences in outcomes and costs.

Morales predicts that centers that follow the new recommended guidelines and put in place the infrastructure outlined in the manuscript will elevate the quality of care and thus the outcomes for their patients.

“As per the recommendations, we are partnering with institutions to increase access to quality care locally by helping them put into place the appropriate infrastructure they need to care for children with heart disease,” Morales says. “There are certain children whose defects require extensive infrastructure and personnel that some programs will not be able to provide. Through partnership, those patients can still get care at a comprehensive center like Cincinnati Children’s before returning to their home health system. It’s all about elevating care locally but with access to all therapies. We are striving to ensure that care is equitable–regardless of where you are born with congenital heart disease, you should have access to the same quality of care and procedures.”

Read the CHSS announcement and the recommendations in the World Journal for Pediatric and Congenital Heart Surgery, Annals of Thoracic Surgery, and the Journal of Thoracic and Cardiovascular Surgery.