Process and economic evaluation of a transition program for adolescents with congenital heart disease: the Stepstones project

Sammanfattning: Transition programs have been developed for adolescents with chronic conditions and evaluated through randomized controlled trials. However, knowledge is lacking on what barriers and facilitators to implementation exist, how change is created, and the cost-effectiveness of these programs. The overall aim of this thesis was to perform a process evaluation and health economic analysis of the STEPSTONES transition program for adolescents with congenital heart disease in transition to adulthood and transfer to adult care. The methods used in this thesis were process evaluations (Studies I – III) and a health economic evaluation (Study IV). Mixed methods were used to design, collect, and analyze data according to the methodological guidance for process evaluation of complex interventions by Moore et al (2015). The findings showed that the transition program was implemented with high fidelity, although some components were more difficult to implement. Factors affecting the implementation process were the participants’ and healthcare professionals’ responsiveness and willingness to engage in the program, organizational factors, recruitment and retention, and the parents’ process of achieving balance between becoming a support system and managing their own information and support needs. Key change mechanisms were the opportunity to meet a transition coordinator trained in person-centered care and adolescent-friendly communication, the creation of a safe space that was built on confidentiality, a learning process starting from the adolescents’ needs, and goal setting beyond the heart defect. The health economic evaluations showed that the intervention group had higher costs due to receiving the transition program. No differences in health outcomes with the EQ-5D were observed in this study. The conclusion is that the transition program was largely implemented as it was intended. Implications from these findings are that transition programs have prerequisites for implementation but tailoring to other conditions and contexts needs to be taken into consideration. Knowledge is needed on the longitudinal impact of transition programs to provide decision makers with evidence on the future benefits of transition programs for adolescents with chronic conditions.