This thesis aimed to find opportunities to improve proactivity and patient-centredness in palliative care, focussing on education and care outcomes. The 2009 national blueprint on medical education... Show moreThis thesis aimed to find opportunities to improve proactivity and patient-centredness in palliative care, focussing on education and care outcomes. The 2009 national blueprint on medical education and the Dutch medical curricula did not comprise all essential elements about end-of-life care. Factors associated with approaching death in patients with advanced cancer visiting the LUMC’s Emergency Department (ED) in the last three months of life were lung cancer, neurologic deterioration, dyspnoea, hypercalcemia and jaundice. Patients with haematological malignancies received more potentially inappropriate care than advanced cancer patients. They rarely had limitations on life-sustaining treatments, although they often died of disease progression or treatment toxicity. The surprise question (SQ) is a simple tool to identify patients with palliative care needs . Adding poor performance status to the SQ improved the predictive value for one-year mortality in advanced cancer patients visiting the LUMC’s ED. The Leiden Guide on Palliative Care (LGP) was developed by the Centre of Expertise in Palliative Care to assess symptom burden and information needs. Patients and family wanted information about current problems and about their worries. Patients, family and clinicians found the LGP helpful. Using their input, the LGP was improved for use by generalist palliative care clinicians. Show less
This dissertation aimed to identify opportunities to slow down disease progression and improve health-related quality of life (HRQOL) in patients with chronic kidney disease (CKD). Biopsychosocial,... Show moreThis dissertation aimed to identify opportunities to slow down disease progression and improve health-related quality of life (HRQOL) in patients with chronic kidney disease (CKD). Biopsychosocial, patient-centred and self-regulation perspectives were employed and enabled this dissertation to shed light on the importance of patients’ health behaviours and illness perceptions in the treatment of CKD. Taken together, this dissertation indicates that patients in early CKD stages are in need of behavioural support to cope with the broad range of barriers that they experience when reducing sodium intake. The results demonstrate that a multicomponent patient-centred self-regulation program would fit patients' needs, and can reduce risk factors for disease progression and improve psychosocial outcomes. Furthermore, this dissertation suggests that support strategies should be implemented to increase the impaired HRQOL that many patients experience during predialysis care. The results underline the need for personalized treatment approaches in light of the differences between patients in relation to their HRQOL and how their HRQOL evolves over time (e.g., differences with regard to age and cardiovascular disease). Moreover, illness perceptions were found to be key factors in HRQOL and disease progression, and therefore, treatment strategies in predialysis care should take into account patients’ illness perceptions as well. Show less
Rheumatoid arthritis (RA) is a chronic disease requiring immediate pharmacological treatment. Chronically-ill patients may also benefit from self-management support and multidisciplinary care. This... Show moreRheumatoid arthritis (RA) is a chronic disease requiring immediate pharmacological treatment. Chronically-ill patients may also benefit from self-management support and multidisciplinary care. This thesis focused on 1) self-management support, and 2) productive interactions between the informed patient and the multidisciplinary care team as applied to the management of RA, with a focus on the patient perspective. With respect to self-management support, this thesis showed that there is a considerable information need among RA patients. An instrument to systematically assess information need (the Dutch ENAT) was translated and tested among RA patients. A website to inform patients about practical aspects of regional health care services had a positive effect on the information need of RA patients. Concerning multidisciplinary team care, this thesis suggests that despite advances in (non-)pharmacological care, subgroups of RA patients remain in need of multidisciplinary team care. The WHODAS II was found to be a valid and responsive instrument to evaluate the effectiveness of team care. However, the ICF Core Sets for RA appeared to be the most useful instrument to make a comprehensive assessment of the RA patient and to optimize goal setting and goal evaluation, as they best covered the aspects considered important by patients. Show less
