Background: Adolescents with congenital heart disease (CHD) are at risk of late complications and require lifelong specialized cardiology follow-up. However, most lack knowledge of their health condition and the self-management skills needed to successfully enter the adult health care system. Our team previously conducted a randomized controlled trial of a nurse-led transition intervention. In this analysis we sought to understand the effectiveness of the nurse-led transition intervention by analyzing qualitative data generated in the context of the clinical trial.

Design & methods: Mixed methods study of a two-session transition intervention conducted by registered nurses in two sites; Stollery Children’s Hospital, Edmonton, and SickKids, Toronto. Adolescents aged 16-17 years with moderate or complex CHD were randomized to a two-session transition intervention or usual care. Session 1 emphasized patient education including creation of a health passport and goal setting. Session 2, two months later, emphasized self-management, including follow-up on goal setting, videos of doctor-patient interactions, and structured role play. Qualitative data extracted from intervention logs, field notes and audio recordings of the sessions were analyzed for content and themes.

Results: Data from 111 sessions with 57 adolescents (31 females) were analyzed; all participants completed Session 1 and 54/57 (95%) completed Session 2. Creation of a health passport, goal setting and role plays were the elements most valued by participants. A typology of transition readiness was identified as follows: 1) the independent adolescent (5%), already managing their own care prior to Session 1; 2) the ready adolescent (46%) who was prepared for transition after completing Sessions 1 and 2; 3) the follow-up needed adolescent (26%) who was still in need of extra coaching after the intervention, and 4) the at-risk adolescent (14%) who warranted immediate follow-up. Five adolescents (9%) could not be classified based on qualitative data available.

Changes in CHD knowledge (MyHeart) (Mackie et al. 2014) and transition readiness scores (TRAQ 4.1) (Sawicki et al. 2009) between baseline, 1, 6, 12, and 18 months were secondary outcomes for the clinical trial. Analyses of these scores after collapsing the independent and ready adolescents into one group and the follow-up and at-risk adolescents into a second group validated typology of transition readiness. The independent and ready participants had higher mean TRAQ self-advocacy scores at baseline compared to the follow-up needed and at-risk adolescents (4.2 ± 0.6, vs. 3.8 ± 0.6, respectively, p=0.03, independent samples t-test). Likewise, the independent and ready participants had higher mean MyHeart scores at baseline compared to the follow-up needed and at-risk adolescents (61 ±23 vs. 46 ±21 respectively, p=0.02, independent samples t-test).

Conclusions: A two-session nursing intervention met the transition needs of approximately half of adolescents with CHD. However, additional transition-focused care was needed by 40% of participants (groups 3 and 4).

Practice implications: These findings will guide health care professionals to optimize a personalized approach for ensuring transition readiness for adolescents and young adults with CHD. Screening for transition readiness, including condition knowledge, in the clinical context seems appropriate to determine the need for and timing of transition care.

Parfeniuk, S., Petrovic, K., MacIsaac, P., Cook, K. A., & Rempel, G. R. (2020). Transition readiness measures for emerging adults with chronic disease: A systematic review. Journal of Transition Medicine, 2(1), 1-16. https://doi.org/10.1515/jtm-2020-0020