In the last decade, through Clinical Outcome Assessment, and especially measurement of patient-reported outcome measures (PROM)s, we, among others, have initiated a shift in focus from meningioma... Show moreIn the last decade, through Clinical Outcome Assessment, and especially measurement of patient-reported outcome measures (PROM)s, we, among others, have initiated a shift in focus from meningioma tumors to meningioma patients. In various studies we describe an improvement in surgical approaches for skull base meningioma. Nevertheless, patient functioning remains impaired in the long-term. We describe that on average nine years after treatment or diagnosis patients still suffer from participation restrictions in social situations with their friends, family, and at work. Often, at the outpatient clinic, we do not pay enough attention to these problems, especially as patient visits become less frequent in the long-term. Importantly, functioning of patients and their informal caregivers (i.e., close relatives/friends) is strongly interdependent. Moreover, patients and healthcare providers find different outcomes and care processes relevant. This underlines the importance of implementation of PROMs in clinical practice. The studies in this thesis suggest that meningioma care trajectories could benefit from the use of 1) case managers guiding patients and their informal caregivers, 2) implementation of PROMs, and 3) prediction models assisting in the identification of individual patients at high risk of long-term lowered functioning. Ideally, these trajectories should follow the value-based healthcare (VBHC) principles. Show less
This thesis investigated the effect of several risk factors on objectively assessed disease progression (renal function decline and time until the start of renal replacement therapy) and... Show moreThis thesis investigated the effect of several risk factors on objectively assessed disease progression (renal function decline and time until the start of renal replacement therapy) and subjectively assessed disease progression (disease-related symptoms and health-related quality of life) in patients with chronic kidney disease on specialized pre-dialysis care. Furthermore, we explored (un)known mechanisms that may determine renal function decline in pre-dialysis patients. The conclusions are: low blood pressure, low proteinuria levels, and low cholesterol levels are associated with a slower objectively assessed disease progression. However, in elderly patients low blood pressure is a marker for an earlier start of renal replacement therapy. Concerning subjectively assessed disease progression, only in young patients treated with anemia-medication, high hemoglobin levels are associated with a better health-relate d quality of life. Furthermore, symptoms increase and health-related quality of life decreases during pre-dialysis care. Therefore, these markers are good candidates for defining the optimal moment to start with dialysis. This thesis also showed that black patients experience a faster renal function decline than white patients. A possible explanation could be the stronger negative consequences of diabetes mellitus in black patients. Finally, at middle-age, renal function is higher in longevity families, revealing possible new genetic mechanisms. Show less
