Adulting in the Current Era: Piloting an Individualized In-Person Congenital Heart Disease Transition Education Program

Adolescents with congenital heart disease (CHD) have varying degrees of readiness to transition to adulthood, including CHD knowledge, disease management skills, and engagement in the transition process. The objective of our study was to determine if educational and skill building visits in an individualized in-person transition program were feasible and improved these aspects of transition readiness. We conducted a retrospective cohort study analysis of an in-person transition program from 2019 to 2021. Inclusion criteria included patients aged 14-21 years old with age-appropriate neurodevelopment who had established CHD care for structural, electrophysiologic, or primary genetic cardiovascular disorder. CHD knowledge, transition skills, readiness for change, and level of engagement were assessed using a novel knowledge questionnaire, a validated skills questionnaire, and transition team assessment. Multivariate mixed linear regression modeling with repeated measures for those with serial visits assessed for change. 519 patients participated in 714 transition encounters, and 143 encounters were serial visits. Lower scores were associated with non-private insurance, but no association was found with CHD severity. Serial transition visits were an independent predictor of increasing knowledge, skills, transition readiness, and engagement, even when accounting for increasing age (p < 0.05), although the largest effects were after the first visit for most outcomes. Individualized in-person transition programming was feasible, and in those with serial visits was associated with increased CHD knowledge, management skills, and engagement, even in those with structural CHD of great complexity. Future studies should assess whether appropriate transition readiness correlates with improved long-term outcomes in adulthood.