Do we really care? An exploration of patient’s perspectives on healthcare for chronic conditions in children and adolescents

In the past few years there has been a major shift in health care policies, clinical decision making and research toward greater patient centeredness and optimizing quality of care (partly driven by value-based healthcare). A fundamental principle of patient-centered care is to respect the needs, values and preferences of patients in clinic and clinical decision making.
The general aim of this thesis was to analyze to what extend current care in chronic disease, particularly chronic kidney disease in young patients, meets the needs and wishes for these patients. What are potential obstacles? And what is the impact of the chronic disease on daily life for these patients?
The first part of the thesis focusses on current experiences with shared-care, particularly on to what extent valid outcomes for patients are integrated in research and care for young patients with CKD and in how clinicians experience shared-care decision making. We also explore to what extent the current care system meets the special needs for health-care in transgender youth in terms of shared-decision making.
In part II of the thesis we focused on the determinants and impact of an impaired adaptive functioning and life participation for children and (young) adults with CKD. We aim to focus on patient perspectives on life participation and daily life functioning/ adaptive functioning in children with CKD. Previously, it has been found that ‘life participation’ is the most important outcome for children with CKD. Yet, what does life participation mean for this group of patients? Which topics should healthcare workers keep in mind and pay attention to? How can life participation be disturbed and what is the impact of this on the patient?