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

Abstract

To evaluate the impact of a novel nurse-led transition intervention program designed for young adolescents (age 13-14years) with congenital heart disease (CHD). We hypothesized that the intervention would result in improved self-management skills and CHD knowledge. Single-center cluster randomized controlled trial of a nurse-led transition intervention vs usual care. The intervention group received a 1-hour individualized session with a cardiology nurse, focusing on CHD education and self-management. The primary end point was change in TRANSITION-Q (transition readiness) score between baseline and 6months. The secondary end point was change in MyHeart score (CHD knowledge). 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 6months (intervention) vs 47±14 to 44±14 (usual care). Adjusted for baseline score, TRANSITION-Q scores at 1 and 6months were greater in the intervention group (mean difference 5.9, 95% CI 1.3-10.5, P=.01). MyHeart score (range 0-100) increased from 48±24 at baseline to 71±16 at 6months (intervention) vs 54±24 to 57±22 (usual care). Adjusted for baseline score, MyHeart scores at 1 and 6months were greater in the intervention group (mean difference 19, 95% CI 12-26, P<.0001). Participants aged 14years had a greater increase in TRANSITION-Q score at 6months compared with 13-year-old participants (P<.05). A nurse-led program improved transition readiness and CHD knowledge among young adolescents. This simple intervention can be readily adopted in other healthcare settings. ClinicalTrials.gov: NCT02374892.