Epidemiology of ACHD: What Has Changed and What is Changing?

The worldwide population of adults with congenital heart disease (ACHD) has grown steadily over the last few decades, estimated at approximately 1.4 million people in 2010 (Gilboa et al., 2016). Innovations in surgical and medical treatment of children with congenital heart disease (CCHD) have dramatically improved survival, resulting in a growing population of ACHD patients with unique health needs (Marelli et al., 2014; Khairy et al., 2010). This growth has significant implications for health care providers and health systems, which must adapt to meet the demands of caring for this complex population. Obtaining an accurate estimate of the population prevalence of ACHD is essential to define the population and to better advocate for resources to meet the needs of this group. While there is a general consensus that the prevalence of CCHD at birth is about 8 per 1000 live births, defining the prevalence in the adult population is a more challenging endeavor (van der Linde et al., 2011).