A substantial number of parents lack knowledge about the importance of life-long specialized care for their children with congenital heart disease, according to a study published in the journal Pediatrics this week. The study involved researchers from nine pediatric cardiology centers, including Akron Children's Hospital.  Improved surgical and other treatments have boosted survival rates for children, leading to a growing number of adults with congenital heart disease. In fact, there are now more than 1 million adults in the United States living with congenital heart disease.  National guidelines recommend that nearly 50 percent of adult survivors of congenital heart disease receive life-long congenital cardiac care, but the number of adults receiving such specialized care appears far less.

In this multi-center study, researchers administered a questionnaire to 492 parents of children with moderate to complex congenital heart disease to assess their knowledge regarding the need for life-long congenital cardiac care for their children. While most parents (81 percent) understood their child would need life-long care, only 44 percent recognized that their child's care should be guided by a cardiologist specially trained to care for adults with congenital heart disease.

Adult congenital heart specialists differ from cardiologists who treat adults for heart diseases associated with lifestyle and aging, such as high cholesterol, high blood pressure and other cardiac problems. Cardiologists specially trained in adult congenital heart disease are experts in the various types of heart problems that originate at birth, such as defects of valves and ventricles and transposition of the great vessels.  "This study is an eye opener," said Kathy Ackerman, BSN, CPN, nurse manager for Akron Children's Heart Center and one of the study's authors. "It will help us as adult congenital heart care providers to focus our educational efforts to assure that parents are involved early in understanding their child's future healthcare needs."

According to Ackerman, the majority of patients with congenital heart disease experience interruptions in care that often begin in late adolescence and extend until the onset of an acute healthcare crisis. Some congenital heart conditions require follow-up catheter or surgical re-interventions.

Ackerman said the study suggests that doctors and nurses who work in pediatric heart centers could do better in communicating with parents that their children will require specialized life-long care. But she was gratified to see that the overwhelming majority of parents (96 percent) indicated they were interested in learning more about the care their child would require in adulthood.  "Our patients at Akron Children's are fortunate to have quality cardiac care from birth and continuing into adulthood, provided by experts in adult congenital heart disease," she said.

Children's Hospital Boston was the coordinating center for the study. In addition to Akron Children's Hospital, the other centers participating were Children's Hospital Los Angeles, Miami Children's Hospital, Nationwide Children's Hospital, Penn State Milton S. Hershey Medical Center, the Children's Heart Clinic in Minneapolis, the University of California San Francisco Medical Center, and the University of Florida.