Journal
JOURNAL OF THE AMERICAN COLLEGE OF CARDIOLOGY
Volume 57, Issue 23, Pages 2368-2374Publisher
ELSEVIER SCIENCE INC
DOI: 10.1016/j.jacc.2010.11.068
Keywords
adolescent; congenital; continuity of care; heart defects; heart defects, congenital; transfer; transition
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Objectives 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. Background 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. Methods A descriptive, observational study was performed, including 794 patients with congenital heart disease examined and/or treated at a tertiary care center. Results 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. Conclusions 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. (J Am Coll Cardiol 2011;57:2368-74) (C) 2011 by the American College of Cardiology Foundation
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