Misleading quality metric discourages early surgical repair of pediatric congenital heart defects

Richard A. Jonas, MB, BS, FACS, FRACS
Richard A. Jonas, MB, BS, FACS, FRACS

A growing number of pediatric surgical centers are moving away from early surgical repair of congenital heart defects because of a misleading quality metric, according to Richard A. Jonas, MB, BS, FACS, FRACS.

Quality measures that focus on early hospital mortality encourage hospitals to use two procedures to correct congenital heart defects, he explained. However, patient outcomes at one year or longer is a more appropriate quality measure for pediatric congenital heart disease and encourages hospitals to focus on early primary repair, which has lower overall mortality, improved developmental outcomes, better family outcomes, and lower total cost compared to early palliation plus later repair, he said.

“In adult cardiac surgery, using early cardiac mortality as a quality marker is reasonable and valid,” said Dr. Jonas, chief of cardiac surgery and co-director, Children’s National Heart Institute, Children’s National Medical Center, Washington, DC. “In the area of congenital heart surgery, using early hospital mortality as the only metric by which congenital heart outcomes are being judged is pushing programs away from early primary repair. We know that early primary repair is preferable for the child, for the family, and for society.”

Dr. Jonas will discuss the clinical, societal, and financial advantages of early surgical repair of congenital heart defects in pediatric patients during Monday’s John H. Gibbon, Jr., Lecture, Early Hospital Mortality: A Misleading Metric for Quality Assurance in the New Era of Hybrid Palliation of Congenital Heart Disease.

Dr. Jonas said it has been clear since the late 1980s that the overall risks of a single, early repair are less than the combined risks of an early palliative procedure followed by a period of interim palliation with abnormal circulation and a later repair in the older and larger child. Early repair also avoids potential physical and mental developmental damage to the child resulting from impaired circulation following palliative surgery, he said.

From a cost-savings perspective, a single, early repair procedure is less than half the cost of early palliation plus later repair, Dr. Jonas added. And knowing that the congenital defect has been repaired improves the psychological health of the family.

The problem, he explained, is that pediatric databases used widely in the U.S. and Europe focus on early hospital mortality as a quality marker for the treatment of congenital heart repairs as initially developed for adult cardiac surgery. Although the highest-risk pediatric patients are more likely to survive an initial palliative procedure, they have a risk of death before the later repair that is not captured by the early mortality metric, he said. With early primary repair, the early mortality metric captures every death, suggesting a higher mortality with this approach even though there’s significantly improved survival at one year and longer.

“The current incentive is pressuring hospitals away from early primary repair, which is important to the child, the family, and society,” Dr. Jonas said. “We need a congenital heart defect database that includes all patients who arrive in a hospital with a diagnosis. Survival at least one year out is how congenital heart care should be judged. Avoiding early primary repair is a retrograde step for our specialty.”

The World Society for Pediatric and Congenital Heart Surgery is developing such a database and has enrolled 20,000 patients in 18 months. Dr. Jonas has been urging U.S. and European centers to register with the database, which is linked to the Society of Thoracic Surgeons National Database and avoids dual data entry.

“Looking at database metrics very carefully is increasingly important,” he said. “We have to be very careful in the metrics we are using if we want to encourage the best outcomes for our patients.”

The John H. Gibbon, Jr., Lecture was established in 1971 to honor Dr. Gibbon, a pioneer in open-heart surgery, and is sponsored by the Advisory Council on Cardiothoracic Surgery.