The patient population and requirements for optimal care

Abstract

Increasing numbers of individuals born with congenital cardiac defects are surviving to adulthood. Although estimates of the size of this population vary, it seems likely that the number of adults with congenital heart disease will increase each year, and will soon exceed the number of children with congenital heart disease. Many adults with congenital heart disease have simple defects and may require minimal specialized cardiac care, but at least half of the adult population have conditions of moderate or severe complexity. There are few trained subspecialists to care for this unique group of patients, and there are no established pathways for the training of adult congenital heart disease specialists. Most will come from programs that combine training in internal medicine, cardiology and pediatric cardiology. The increased number of adults with congenital heart disease will also demand more formal training in congenital heart disease during cardiology fellowship. The low prevalence and high complexity of congenital heart disease lends itself to a model in which a local caregiver or center is supported by a regional specialized center. A regional adult congenital heart disease center is directed by an adult congenital heart disease cardiologist supported by a multidisciplinary team, and provides a variety of services including comprehensive diagnosis, management planning and patient counseling. It is proposed that improved education and training of adult congenital heart disease specialists and regionalization of care will improve access to and quality of care for this population.