Transition Intervention for Adolescents With Congenital Heart Disease

Andrew S. Mackie, Gwen R. Rempel, Adrienne H. Kovacs, Miriam Kaufman, Kathryn N. Rankin, Ahlexxi Jelen, Maryna Yaskina, Renee Sananes, Erwin Oechslin, Dimi Dragieva, Sonila Mustafa, Elina Williams, Michelle Schuh, Cedric Manlhiot, Samantha J. Anthony, Joyce Magill-Evans, David Nicholas, Brian W. McCrindle

Research output: Contribution to journalArticlepeer-review

66 Scopus citations


Background: There is little evidence regarding the efficacy of interventions to prepare adolescents with congenital heart disease (CHD) to enter adult care. Objectives: The goal of this study was to evaluate the impact of a nurse-led transition intervention on lapses between pediatric and adult care. Methods: A cluster randomized clinical trial was conducted of a nurse-led transition intervention for 16- to 17-year-olds with moderate or complex CHD versus usual care. The intervention group received two 1-h individualized sessions targeting CHD education and self-management skills. The primary outcome was excess time to adult CHD care, defined as the interval between the final pediatric and first adult cardiology appointments, minus the recommended time interval, analyzed by using Cox proportional hazards regression accounting for clustering. Secondary outcomes included scores on the MyHeart CHD knowledge survey and the Transition Readiness Assessment Questionnaire. Results: A total of 121 participants were randomized to receive the intervention (n = 58) or usual care (n = 63). At the recommended time of first adult appointment (excess time = 0), intervention participants were 1.8 times more likely to have their appointment within 1 month (95% confidence interval: 1.1 to 2.9; Cox regression, p = 0.018). This hazard increased with time; at an excess time of 6 months, intervention participants were 3.0 times more likely to have an appointment within 1 month (95% confidence interval: 1.1 to 8.3). The intervention group had higher scores at 1, 6, 12, and 18 months on the MyHeart knowledge survey (mixed models, p < 0.001) and the Transition Readiness Assessment Questionnaire self-management index (mixed models, p = 0.032). Conclusions: A nurse-led intervention reduced the likelihood of a delay in adult CHD care and improved CHD knowledge and self-management skills. (Congenital Heart Adolescents Participating in Transition Evaluation Research [CHAPTER 2]; NCT01723332)

Original languageEnglish (US)
Pages (from-to)1768-1777
Number of pages10
JournalJournal of the American College of Cardiology
Issue number16
StatePublished - Apr 24 2018
Externally publishedYes


  • adolescent
  • clinical trial
  • intervention
  • transition

ASJC Scopus subject areas

  • Cardiology and Cardiovascular Medicine


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