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A GROWING POPULATION

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Congenital heart disease (CHD) is the most common birth defect with an incidence ranging from 4 to 50/1000 live births, a range that is dependent on definitions and global variation.1 With improved medical, surgical, and intensive care, over the past several decades, the survival to adulthood has exponentially improved. It is now expected that greater than 90% of children born with CHD will survive to adulthood (Figure 1-1). Consequently, in the United States, there are now greater than 1 million adults with congenital heart disease (ACHD), with a 5% increase or 20,000 new patients reaching adulthood each year (Figure 1-2). In fact, it is estimated that for the first time in history, there has been a shift in the CHD population (Figures 1-3A, 1-3B, and 1-3C) with more adults living with CHD than children (Figure 1-4)2.

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FIGURE 1-1

Factors leading to improved congenital heart disease (CHD) care and expanding population of adolescent and adults with CHD.

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FIGURE 1-2

Estimated prevalence of adults with congenital heart disease (ACHD) population in the United States.

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FIGURE 1-3

Shifting congenital heart disease (CHD) population over time from 1965 to 2000, and 2010. There are now more adults than children with CHD.

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FIGURE 1-4

Adult versus pediatric congenital heart disease (CHD) population in the United States for simple, moderate, and complex forms of CHD.2 (Reproduced with permission from Williams RG, Pearson GD, Barst RJ, et al. The report of the National Heart, Lung, and Blood Institute working group on research in adult congenital heart disease. J Am Coll Cardiol 2006;47:701–707.)

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With the rise in the ACHD population, there has been a similar surge in clinics caring for this unique and complex population (Figure 1-5), as well as fellowship programs to train cardiologists in the field of ACHD. In the United States and around the world, there is a focused and directed effort to create comprehensive ACHD centers and establish training guidelines for cardiologists. This process was well outlined in 2000 at the American College of Cardiology 32nd Bethesda Conference and published in 2001.3 There are now established training guidelines, to become an ACHD specialist. Cardiologists have to spend two extra years training in ACHD after finishing either their general pediatric or adult cardiology fellowships.

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FIGURE 1-5

Adult congenital heart disease (ACHD) programs in North America. (From Adult Congenital Heart Association [ACHA] www.achaheart.org)

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