Abstract 14103: An Educational Intervention Improves Transition Behaviors and Knowledge Among Youth With Cardiac Disease
Introduction: Many adolescents living with congenital heart disease (CHD) have limited knowledge of their heart, impairing their potential to transition successfully from child-centred to adult-oriented care. There are a paucity of outcome data with respect to facilitating transition in this population.
Hypothesis: An educational intervention will improve transition-behaviours and knowledge among youth with CHD.
Methods: The Congenital Heart Adolescents Participating in Transition Evaluation Research (CHAPTER) Study was a single-center cluster randomized trial that enrolled 15-17 year olds with moderate or complex CHD. Subjects were assigned to a one hour nurse-led one-on-one intervention or usual care (control). The intervention protocol included review of a diagram depicting the subject’s cardiac anatomy and prior surgical/ catheter interventions; potential late cardiac complications; name, dose and rationale for the subject’s medications; and creation of a portable health summary (MyHealth passport). Primary end points were the Self-management and Self-advocacy domains of the standardized Transition Readiness Assessment Questionnaire, measured at enrolment and 6 months post-intervention. The secondary endpoint was CHD knowledge (MyHeart score) at 6 months. Analyses were intention-to-treat.
Results: We enrolled 58 subjects: 27 intervention and 31 usual care. Three subjects in the intervention arm declined an intervention but completed questionnaires; all were analyzed within the intervention group. The intervention lasted 68±18 minutes (n=24). Mean Self-management score improved from 2.8 ± 1.0 at baseline (range 1-5, higher scores reflect greater self-management) to 3.6 ± 0.8 at 6 months (intervention group) vs. 2.9 ± 1.0 to 3.2 ± 1.1 (control) (p=0.04). Mean Self-advocacy score improved from 3.9 ± 0.8 to 4.4 ± 0.6 (intervention) vs. 3.9 ± 0.7 to 4.0 ± 1.0 (control) (p=0.06). Median MyHeart score improved from 59% to 77% correct (intervention) (p<0.001) vs. 61% to 65% correct (control) (p=0.13).
Conclusion: This transition intervention resulted in improved Self-management scores and CHD knowledge. Individualized education is feasible and should be routinely incorporated into outpatient follow-up of adolescents with CHD.
- © 2013 by American Heart Association, Inc.