Low discontinuity of care rate for adults with complex congenital heart disease: A single center's experience

Background: Discontinuity of care between childhood and adulthood is an identified problem for those with congenital heart disease. Objective: This study investigated our center's discontinuity of care rate during this transition period. Methods: The study cohort included those post-Fontan performed in childhood; those post-pulmonary valve, mitral valve, or aortic valve replacements initially performed between birth and age 17 years; those post-atrial switch operations; and those with biventricular hearts and discordance of atrioventricular and ventriculoarterial connections. We included patients born between 1978 and 2000 and cared for at our center initially from a prenatal diagnosis, birth, infancy, or childhood. We defined discontinuity of care as lack of continuing care until a minimum of 20 years of age, after excluding those that died before 20 years old or had documented continuing care at another center. We also tabulated patients that underwent at least one adult invasive procedure during continuous care. Results: We identified 245 patients, of which 19 (7.8%) experienced discontinuity of care. Of the 226 in continuous care, 137 (60.6%) underwent 187 invasive procedures as adults: 36 cardiovascular surgeries, 82 surveillance cardiac catheterizations with or without transvenous liver biopsy, 32 interventional cardiac catheterizations, and 37 electrophysiology procedures with or without a pacemaker procedure. Conclusion: We found a low, 7.8% discontinuity of care rate for adults with complex congenital heart disease at our center. Further, for adults with complex congenital heart disease, most required additional invasive procedures as adults.