Transition Preparation for Young Adolescents with Congenital Heart Disease: A Clinical Trial.

OBJECTIVE To evaluate the impact of a novel nurse-led transition intervention program designed for young adolescents (age 13-14 years) with congenital heart disease (CHD). We hypothesized that the intervention would result in improved self-management skills and CHD knowledge. STUDY DESIGN Single-center cluster randomized controlled trial of a nurse-led transition intervention versus usual care. The intervention group received a 1-hour individualized session with a cardiology nurse, focusing on CHD education and self-management. The primary endpoint was change in TRANSITION-Q (transition readiness) score between baseline and 6 months. The secondary endpoint was change in MyHeart score (CHD knowledge). RESULTS We randomized 60 participants to intervention (n=30) or usual care (n=30). TRANSITION-Q score (range 0-100) increased from 49± 10 at baseline to 54± 9.0 at 6 months (intervention) vs. 47± 14 to 44± 14 (usual care). Adjusted for baseline score, TRANSITION-Q scores at 1 and 6 months were higher in the intervention group (mean difference 5.9, 95% CI 1.3-10.5, p=0.01). MyHeart score (range 0-100) increased from 48± 24 at baseline to 71± 16 at 6 months (intervention) vs. 54± 24 to 57± 22 (usual care). Adjusted for baseline score, MyHeart scores at 1 and 6 months were higher in the intervention group (mean difference 19, 95% CI 12-26, p<0.0001). Participants age 14 years had a greater increase in TRANSITION-Q score at 6 months compared with 13-year-olds (P < .05). CONCLUSIONS A nurse-led program improved transition readiness and CHD knowledge among young adolescents. This simple intervention can be readily adopted in other healthcare settings.