Donderdag 28 oktober 2021
Project of Markus Saarijärvi: Process and economic evaluation of a transition program for adolescents with congenital heart disease: the STEPSTONES project
A complex nursing intervention is to facilitate the patients transition from one state, condition or place to another. For adolescents living with a chronic condition, such as congenital heart disease (CHD), the transition from adolescence to adulthood is particularly challenging, as the young person also must transfer their care from a pediatric to an adult setting. To ensure continuity of care and support self-management and independence in adulthood, transition programs have been advocated. However, comprehensive evidence on the effectiveness of transition programs is limited. Therefore, this doctoral thesis aims to perform a process and health economic evaluation of a transition program for adolescents with CHD. These studies are all part of the STEPSTONES (Swedish Transition Effects Project Supporting Teenagers with chrONic mEdical conditionS) project, which evaluates the effectiveness of a transition program empowering adolescents with chronic conditions in transition to adulthood and transfer to adult care. To achieve this overall aim, four studies were performed using qualitative, quantitative and mixed method designs. The Medical Research Councils guidance on Process evaluation of Complex Interventions was used as the overarching methodological framework.
The first study evaluated the reach and representativeness of the randomized controlled trial (RCT) evaluating the effectiveness of the STEPSTONES project. First, we compared clinical and demographic characteristics of participants (n=134) and non-participants (n=223) in the RCT quantitatively using national register data. Second, reasons for participating or not participating in the RCT were explored qualitatively by sub-sampling participants (n=10) and non-participants (n=20). Results showed that participants in the RCT had a more complex CHD than non-participants. No other statistically significant differences were observed and the effect sizes were negligible. The qualitative analysis generated three categories of reasons that were considered to affect study participation; personal reasons, altruistic reasons and external reasons and factors*. In the second study we evaluated to what extent the transition program was delivered as intended by evaluating the level of fidelity of the program and exploration of potential moderating factors affecting the delivery of the program. This manuscript is submitted and under review. The third study aimed to describe adolescents and their parents’ experiences of participating in the transition program, and to explore the potential mechanisms of impact. Semi-structured interviews were undertaken with 14 adolescents and 12 parents that had participated in the transition program. Data from these interviews were analyzed with content analysis. Results showed that the adolescents experienced increased empowerment in several dimensions of this construct. Meeting a transition coordinator trained in person-centered care and adolescent health and embarking on an educational process based on the adolescents’ prerequisites in combination with peer support were considered key change mechanisms. However, support to parents were not sufficient for some participants, resulting in ambivalence about changing roles and the unmet needs of parents who required additional support**. The fourth and final study which is currently in manuscript evaluated the cost-effectiveness of the transition program in comparison to usual care, in a Swedish healthcare setting.
*Study 1 full text: https://bmcmedresmethodol.biomedcentral.com/articles/10.1186/s12874-020-01088-7
**Study 3 full text: https://bmchealthservres.biomedcentral.com/articles/10.1186/s12913-021-06567-1
This PhD fellowship is designed as a double degree between Sahlgrenska Academy and AccentVV. Markus Saarijärvi is supervised by Prof. Philip Moons (AccentVV, KU Leuven) and Prof. Ewa-Lena Bratt (Sahlgrenska Academy, University of Gothenburg).
