People with a rheumatic disease (RD) can still experience many problems in both physical and psychosocial areas despite the good treatments. These problems can change over time. The people must be able to deal with the disease and the consequences in daily life, thus self-management of the disease.
The main questions of this thesis were:
1) What do patients with an RD prefer with regard to self-management support and what are the unmet needs that might impede self-management (support)?
Several studies were conducted to investigated the (unmet) needs of patients with any rheumatic disease. We could conclude that the current care does not meet the (self-management)needs for adolescents with a RD in the phase of transition.
Patients primarily see self-management as their own task, but they still appreciated support to help achieve this. Self-management support must coaches patients in developing problem-solving skills for managing the medical, emotional and social challenges experienced in dealing with a rheumatic disease in daily life.
Patients have difficulties to cope with topic like stress, finding balance, social roles etc. These topics can lead according to the patients to a discrepancies of the perceived disease activity between health professionals and patients.
Fatigue is an unmet need with a large impact on quality of life, and it is still unmanageable in many patients. Despite a strict treat-to-target strategy, fatigue is in almost 50% present at the start of the disease and remained an overall problem during the first year of treatment. Monitoring fatigue may be important in managing fatigue.

2.What self-management support interventions can improve the care for adult and young patients with an RD?
We developed a model for self-monitoring by predicting the disease activity with patient reported outcomes. Self-monitoring is an important self-management skill. Using the score and evolvement different patient reported outcomes over time to predict future DAS28 moderate to high disease activity resulted in a moderate performance (sensitivity 0.61, specificity 0.75).
To support patients’ self-management, we developed and implemented a smartphone-application (RD-app). A before-after study was designed to measure the effects of use of the RD-app on patients’ self-management behavior after implementation of the RD-app. The self-management scale did not changed after 3 months. The RD-app seemed to be beneficial for participants in their need to get more grip on the disease by receiving tips, information on exercises and gaining insight in self-reported disease activity.
A quantitative cross-sectional observational study was performed to evaluate the clinical transition pathway. This study showed that the implementation of the clinical transition pathway has led to a substantial improvement of patient care during the transitional process – leading to a low drop-out rate and a high satisfaction with transition. High scores on the self-reported self-efficacy scale suggest that these youngsters have achieved sufficient skills and are confident to successfully manage their disease.