PhD defence M.A.C. (Mariëlle) Peeters

Dissertation in short:

Adolescence is a complex and challenging period for people with chronic conditions as they are facing multiple life-course transitions while managing a demanding disease. At
the same time, they are expected to transfer from pediatric to adult care services. This transfer or actual move between care systems is merely one event in the total of ‘transition
in care’ process, including preparation, planning, tracking, and follow-up. Attention for access to and good quality of care during the transition period (i.e., the years around
the transfer to adult care) is highly needed.

Much has been learned in recent years about the core elements of transitional care and the risks of a poorly organized transfer, but it remains unclear what good transitional
care actually entails, especially from the viewpoint of the young people themselves. A prerequisite to further embed and improve transitional care in clinical practice
is obtaining more evidence on how to compare and evaluate various transitional care arrangements. These were reasons to undertake the research described in this thesis,
which elaborates on the current situation of transitional care for young people with chronic conditions in the Netherlands. Special attention is paid to the case of diabetes
mellitus type 1 (T1DM) as one of the most common somatic chronic conditions among Dutch children and young people. The two-year Better Transition in Type 1 Diabetes (BTD)
program (2016-2018) – a nationwide mixed-methods research and quality improvement program aimed to advance diabetes transitional care in the Netherlands – formed the
basis of the research.

The thesis consists of two parts, of which the first part (chapters 2 to 4) addresses the question of what good transitional care actually entails. The studies presented in part I
provide insight into how T1DM impacts on the lives of young people, what this means for their needs and preferences in care, and how they are currently supported in their
transition towards adulthood and adult care. The second part (chapters 5 to 8) concentrates on the ‘transition clinic’, a key intervention where professionals from pediatric and
adult care collaborate in the delivery of outpatient transitional care. This intervention is highlighted as it responds to the core elements of the On Your Own Feet transitional care
framework and is often advocated as best practice. Part II starts with the development of an evaluation framework for the functioning and outcomes of outpatient transition
clinics compared with direct hand-over care, followed by three studies that aimed to test this framework in different patient groups.