Grant: Operating Grant

Children born with congenital are now becoming adults. As where previously, many "blue babies" died, advances in surgery and medicine has resulted in better survival and increasing number of patients. Our group has previously shown that there were 96,000 adults with congenital heart disease in Canada in 2000. This population is growing at a rate of 5-15% per year. Our health care system has invested many resources to help these children survive in outstanding Canadian pediatric institutions. But now this growing population needs to be transitioned to adult hospitals. Our group has shown that this is happening poorly and many patients are lost to follow up. Guidelines have been published in Canada and the US indicating that adults with heart defects should be followed in specialized centers. But in Canada, at the moment less than 30% of the adult patients are meeting these recommendations. This group of patients often fall through the cracks of care. They are not children but they do not have the usual kinds of heart disease that we often hear about. The Canadian public should not allow health care dollars to be lost when children with heart disease grow up. With this proposal we will examine disparities in care. Why are the adult patients with heart defects not being seen in specialized centers ? Can we measure the benefit to be gained from being followed in these centers ? Can we show that these specialized centers contribute to the well being of the patients and we believe we can. If so, we could provide data that would help policy makers provide more resources to improve health care delivery for this young and growing group of young adults.