The Future of ACHD Care Symposium: Changing demographics of congenital heart disease

In this article, we demonstrate that congenital heart disease (CHD) has now become a life-long condition spanning from birth to old age. We begin by understanding the determinants of demographics in terms of the changing epidemiology of CHD: incidence, survival and prevalence of CHD across the lifespan.The reported birth prevalence of CHD most commonly clusters around 8/1000 live births. Advances in medical and surgical therapy have led to an increase in the survival of CHD patients with an increase in the median age at death in those with severe CHD of 20 years since l987. The prevalence of CHD increased by 22% in children and 85% in adults with severe CHD from 1985 to 2000 such that in the year 2000, CHD prevalence in Quebec was 4/1000 adults and 12/1000 children. Thus, the median age of those alive with severe CHD has also increase from 11 to 17 years as observed from 1985 to 2000 and is expected to further increase between 2000 and 2020. There are data suggesting a female predominance in the ACHD population which may impact birth rates of CHD in the future. The estimated number of adults with CHD who have severe or complex disease is likely to be 10–25% when population data are considered.The impact of changing demographics on clinical outcomes and disease burden on the adult CHD population has become considerable. Our commitment to patient care necessitates that we continue to improve the quality of care based on the needs of this population as illustrated by trends in medical complications and health services utilization.