Heart Care Info - Heart Disease Prevention & Treatment

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

E Goossens, I Stephani, D Hilderson... - Journal of the ..., 2011 - Am Coll Cardio Found... To address this issue, we are currently preparing the INTERCHANGE (INTERnational study on the Continuation of Heart health checks in young Adults with co NGEnital heart disease) study, an international study on healthcare-related, hospital-related, and patient-related ...

Eva Goossens, M Sc, RN*, Ine Stephani, M Sc, RN*, Deborah Hilderson, M Sc, RN*, Marc Gewillig, MD, Ph D, Werner Budts, MD, Ph D, Kristien Van Deyk, M Sc, RN, Philip Moons, Ph D, RN*,,* SWITCH2 Investigators

Manuscript received July 23, 2010; revised manuscript received November 15, 2010, accepted November 30, 2010.

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.

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.