Improving the care of Canadian adults with congenital heart disease.

Canadian children with congenital heart disease (CHD) have been well cared for in the past half-century. These childhood success stories have resulted in there now being approximately 100,000 Canadian adults with CHD. Few of these patients have been cured or have normal hearts, and most were left with problems that will need to be addressed later in life. Approximately 55,000 such patients need expert care because their conditions are so rare or complicated that cardiologists and other caregivers have not been trained to look after them. Moreover, these 55,000 Canadians face premature mortality, the need for further surgery or the prospect of major complications. They need expert care to optimize the quality of their lives and to help them to avoid premature death. There is no plan for the care of these patients. When they reached 18 years of age, they were moved into an adult care system that does not understand them, does not care about them and has not provided for their care. Provincial and federal Ministries of Health have not yet taken an interest in these patients. Canadian professionals have taken important steps in support of adults with CHD. They established the Canadian Adult Congenital Heart Network, and they developed a National Care Plan and management guidelines for their care. They have also made important contributions to the scientific literature, advancing the care of these patients. Waiting lists are much too long for adult patients with CHD. There are serious local and regional obstacles to the care of these patients because there are no provincial or regional plans for their care. Cardiologists who treat adult patients with CHD cannot earn enough in a fee-for-service system. There are serious human resource problems in Canadian Adult Congenital Heart Network centres that need to be addressed. There also needs to be greater coordination and integration between the pediatric and adult systems that care for these patients. Adults with CHD desperately need the help of the Heart and Stroke Foundations, leaders in the Canadian health care community and, ultimately, the Ministries of Health to help them protect their health and access expert care when needed in a timely way. The promises offered to them as children must also be honoured in their adult years.