Care of the adult congenital heart disease patient in the United States: a summary of the current system

Abstract

With improvements in care, there has been exponential growth in the population of adult congenital heart disease (ACHD) patients. We sought to assess the availability of specialized ACHD care in the United States. We analyzed the Adult Congenital Heart Association's ACHD clinic directory for information on patient volume, provider training, and other characteristics. The information is self-reported and unverified. The ACHD directory included 72 programs in the United States. Across programs, the majority of patients (33%) seen were between 21 and 30 years old. Program directors had between 2 and 50 years (median 15) of ACHD experience and had dedicated between 10 and 100% (median 30%) of their clinical time to ACHD. There were 2,800 ACHD operations performed per year, ranging from 0 to 230 (median 28) per program. There were between 0 and 5 cardiac surgeons (median 2) involved per program. Each surgeon averaged 20 ACHD operations per year. The growing ACHD population is a largely underserved group. Few programs in the United States provide specialized care, and this care is variably conducted within pediatric and/or adult facilities. These data should serve as a stimulus to improving accessibility of services for this vulnerable population.