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Congenital Heart Disease Facts and Issues

 

  • Congenital heart disease (CHD) is the world’s leading birth defect. About 1 in 100 Canadian children are born with CHD. In the past, few made it past their teens. Now, 95% make it to adulthood – resulting in a growing population of young adults who require life-long cardiac care.

 

  • Across Canada, there are an estimated 100,000 adults with CHD (outnumbering CHD-affected children). At least half face the prospect of complications, multiple surgeries, and/or premature/sudden death.

 

  • There are far fewer resources allocated for the care of adult CHD patients than other cardiac patients. As a result, wait times for clinical visits and surgical intervention are much longer than for other cardiac patients – leading to increased anxiety, added risk and even death.

 

  • In Ontario, there are roughly 40,000 adult CHD patients (and 40,000 children), but only seven cardiologists formally trained in the care of adult CHD patients and only four surgeons with adult CHD expertise. Without special training, health care professionals often lack the skills needed to understand the complex anatomy and ongoing physiological changes of adult CHD patients.

 

  • Because billing rates do not reflect the time required to treat the complex medical conditions of adult CHD patients, it’s difficult for practitioners to focus exclusively on this specialty. Most are forced to supplement their income through other means.

 

  • There is currently no coordinated plan to transfer the medical records of CHD patient transitioning from pediatric to specialized adult care. Less than half of patients with complex congenital heart defects transition successfully; as a result, many do not receive the care they need.

 

  • Research in the area of adult CHD has not reached the level of sophistication observed in other areas of heart disease research – even though CHD-related research has the potential for greater impact. At the same time, peer review committees for research funds rarely include adult CHD specialists and frequently mistake the lack of research sophistication for a lack of quality or relevance.