Exploring patients'preferences on care: A roadmap to tailored online self-management interventions

Abstract

In this thesis, research on self-management and self-management interventions for young adults and adult patients suffering from a rheumatic disease is presented. Self-management interventions aim to support the patient in dealing with the consequences of rheumatism in daily life. The interventions are based on needs assessment for self-management support within both groups. Next to that, patients participated actively during the whole research cycle: from development of the interventions, to defining research goals, choosing the design and offering input and analyzing and describing the results. This resulted in the development of a transition outpatient clinic at the University Medical Center Utrecht. Here young adults with rheumatism and their parents are guided in the transition from children's to adult care. Furthermore, online self-management training for young people and adults with rheumatism are developed in which participants are guided by other patients, suffering from a rheumatic disease themselves (www.reumauitgedaagd.nl). Also an online portal for both groups and an informative website for young people (www.jong-en-reuma.nl) are developed and imbedded in daily care. Feasibility studies in both populations and a RCT among young adults showed that the interventions are feasible and promising to enhance self-management. Also they meet the needs and preferences for self-management support of both groups. Consequently, the interventions are a valuable contribution to usual medical care. Furthermore, a reflection on the process of development, research and implementation and the consequences for the health care professionals in daily practice are described in the thesis.