Congenital Heart Disease Epidemiology in the United States

Article, see p 101Congenital heart disease (CHD) is the most common of all congenital defects, affecting nearly 1% of live births. Creative operative and catheter-based interventions have facilitated survival to adulthood with nearly all defects, setting the stage for a rapidly growing population of adolescents and adults with CHD. Although the field of adult CHD (ACHD) remains in its infancy, it is important to acknowledge the tremendous achievements in the United States and abroad over the last decades. ACHD publications have increased almost exponentially (Figure). The first American College of Cardiology/American Heart Association joint guidelines on the diagnosis and management of ACHD were published in 20081 with a revision anticipated soon; subspecialty status in cardiology was granted by the American Board of Medical Specialties in 2012 with the first qualifying examination offered in the fall of 2015, and the first class of American Council for Graduate Medical Education–approved fellowship training begins July 2016. Multicenter and multinational research collaborations have formed, including the Alliance for Adult Research in Congenital Cardiology, as have patient/provider collaborative organizations such as the Adult Congenital Heart Association and the International Society of Adult Congenital Heart Disease. Funding for research has also improved, led by the US Department of Defense, the American Heart Association, and the National Heart, Lung, and Blood Institute.Figure. Trends in adult congenital heart disease (ACHD). PubMed cited articles directly relating to adults with CHD over 4-year intervals since 1980 ( blue ) and the estimated number of ACHD patients (from program survey by the Adult Congenital Heart Association and the International Society of Adult Congenital Heart Disease) seen at programs in the United States that self-report as providing specialized care to adults with congenital disease ( red ) during 4 different years since 2005.Despite tremendous progress, obstacles to the appropriate and sustained growth of …