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

Andrew S. Mackie, Kathryn N. Rankin, Maryna Yaskina, Jody Gingrich, Elina Williams, Michelle Schuh, Adrienne H. Kovacs, Brian W. McCrindle, David Nicholas, Gwen R. Rempel

Research output: Contribution to journalArticlepeer-review

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.

Original languageEnglish (US)
JournalJournal of Pediatrics
DOIs
StateAccepted/In press - 2021

Keywords

  • adolescent
  • congenital
  • heart defects
  • transition of care

ASJC Scopus subject areas

  • Pediatrics, Perinatology, and Child Health

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