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

J Pediatr. 2022 Feb:241:36-41.e2. doi: 10.1016/j.jpeds.2021.09.053. Epub 2021 Oct 4.

Abstract

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 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 6 months. The secondary end point 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 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 6 months (intervention) vs 54 ± 24 to 57 ± 22 (usual care). Adjusted for baseline score, MyHeart scores at 1 and 6 months were greater in the intervention group (mean difference 19, 95% CI 12-26, P < .0001). Participants aged 14 years had a greater increase in TRANSITION-Q score at 6 months compared with 13-year-old participants (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.

Trial registration: ClinicalTrials.gov: NCT02374892.

Keywords: adolescent; congenital; heart defects; transition of care.

Publication types

  • Randomized Controlled Trial
  • Research Support, Non-U.S. Gov't

MeSH terms

  • Adolescent
  • Female
  • Heart Defects, Congenital*
  • Humans
  • Male
  • Patient Education as Topic
  • Self-Management
  • Transition to Adult Care / organization & administration*

Associated data

  • ClinicalTrials.gov/NCT02374892