Transfer of Adolescents With Congenital Heart Disease From Pediatric Cardiology to Adult Health Care: An Analysis of Transfer Destinations

Abstract

The transfer of adolescents with congenital heart disease from pediatric to adult care was examined. The aims were to investigate where these adolescents received adult-centered care, to determine the proportion of patients with no follow-up and with no appropriate follow-up after leaving pediatric cardiology, and to explore the determinants of no follow-up and no appropriate follow-up. Even after successful treatment, many patients require lifelong cardiac surveillance by specialized practitioners. Although guidelines describe the most appropriate level of follow-up, this is not always implemented in practice. A descriptive, observational study was performed, including 794 patients with congenital heart disease examined and/or treated at a tertiary care center. Overall, 58 of the 794 patients included (7.3%) were not in follow-up. Cessation of follow-up was found in 2 of 74 patients with complex (2.7%), 31 of 448 patients with moderate (6.9%), and 25 of 272 patients with simple (9.2%) heart defects. Moreover, 684 patients (86.1%) remained in specialized follow-up. According to international guidelines, 81 patients (10.2%) did not receive the minimal level of cardiac care. Multivariable logistic regression revealed that male sex and no prior heart surgery were associated with no follow-up. Male sex, no prior heart surgery, and greater complexity of congenital heart disease were associated with no appropriate level of cardiac follow-up. The proportion of patients in this study lost to follow-up was substantially lower than in other Western countries. Because only patient-related factors were examined with respect to loss to follow-up, further examination of patient-related, hospital-related, and healthcare-related determinants of lack of follow-up is needed.