Comparative effectiveness and experiences of transitional care models for adolescents with Type 1 diabetes in the transition to adulthood: The STEPSTONES-DIAB project

Objectives: Dissertation comprising of four different studies, with the overall objective to explore and evaluate experiences and effectiveness of different transitional care models in youth with type 1 diabetes (T1D), to empower them to become active partners in their health and care. Background: In Western countries, about 10% of adolescents have one or more chronic condition that usually brings the need of lifelong medical follow-up. During transition from adolescence to adulthood and, more specifically, transfer from pediatric to adult care, young people are particularly exposed to challenges and risks. Thus, a well-timed, planned transition allows young people to optimize their ability to assume adult roles and functioning. Effective transfer from pediatric to adult care is however widely inadequate, which may contribute to insufficient continuity of health care and increased risk for adverse outcomes. Therefore, research on transition and transfer, and on interventions that have the potential to improve both processes, is important. To investigate the effectiveness of a structured transition program for young persons with chronic conditions, STEPSTONES (Swedish Transition Effects Project Supporting Teenagers with chrONic mEdical conditionS) has been established. Methods: The first paper (Paper 1) poses development and assessment of psychometric properties of a transition and transfer experiences questionnaire, carried through in a Swedish context. Paper 2 will qualitatively focus on adolescents’ and parents’ experiences of transitional care in the aforementioned specialized youth clinic at Sachs´ Children and Youth Hospital, while the focus of the third paper (Paper 3) will be experiences of two different transitional care models in youth at the pediatric diabetes clinics at Astrid Lindgren’s Children’s Hospital. Paper 4 will quantitatively investigate the effectiveness of the person-centered transition program, empowering adolescents with type 1 diabetes in the transition to adulthood and transfer to adult health care.