This thesis aimed to provide insight in quality of life (QOL) as an outcome in pre-dialysis patients by investigating appropriate ways to measure this construct and by investigating factors... Show moreThis thesis aimed to provide insight in quality of life (QOL) as an outcome in pre-dialysis patients by investigating appropriate ways to measure this construct and by investigating factors affecting QOL. The second aim was to increase the understanding of the different associations between several cardiovascular risk factors and traditional outcomes in pre-dialysis and dialysis patients. In elderly pre-dialysis patients symptoms have a substantial impact on QOL. The effect of symptoms on a relevant outcome measure indicates symptoms which in turn affect other important outcomes, should have a more prominent role in clinical decision making. An appropriate way to measure the construct QOL in pre-dialysis patients with a short questionnaire is by using the SF-12. No association between dyslipidemia and start of dialysis in pre-dialysis patients was found. In pre-dialysis patients, both dual RAS blockade and single ACEi-use were associated with a lower risk of RRT or death, as compared with no RAS blockade. There is no association between vitamin K antagonist use and rate of renal function decline or time until start of dialysis in the pre-dialysis population. Vitamin K-antagonist use compared to no vitamin K-antagonist use is associated with an increased all-cause mortality risk in dialysis patients. Show less
The Swallowing Quality of Life questionnaire (SWAL-QOL) is widely used clinically and in research to evaluate quality of life related to swallowing difficulties. It has been described as a valid... Show moreThe Swallowing Quality of Life questionnaire (SWAL-QOL) is widely used clinically and in research to evaluate quality of life related to swallowing difficulties. It has been described as a valid and reliable tool, but was developed and tested using classic test theory. This study describes the reliability and validity of the SWAL-QOL using item response theory (IRT; Rasch analysis). SWAL-QOL data were gathered from 507 participants at risk of oropharyngeal dysphagia (OD) across four European countries. OD was confirmed in 75.7% of participants via videofluoroscopy and/or fiberoptic endoscopic evaluation, or a clinical diagnosis based on meeting selected criteria. Patients with esophageal dysphagia were excluded. Data were analysed using Rasch analysis. Item and person reliability was good for all the items combined. However, person reliability was poor for 8 subscales and item reliability was poor for one subscale. Eight subscales exhibited poor person separation and two exhibited poor item separation. Overall item and person fit statistics were acceptable. However, at an individual item fit level results indicated unpredictable item responses for 28 items, and item redundancy for 10 items. The item-person dimensionality map confirmed these findings. Results from the overall Rasch model fit and Principal Component Analysis were suggestive of a second dimension. For all the items combined, none of the item categories were 'category', 'threshold' or 'step' disordered; however, all subscales demonstrated category disordered functioning. Findings suggest an urgent need to further investigate the underlying structure of the SWAL-QOL and its psychometric characteristics using IRT. Show less
This thesis focuses on several aspects of quality of life in patients with painful bone metastases, treated with palliative radiotherapy within the randomized Dutch Bone Metastasis Study.The... Show moreThis thesis focuses on several aspects of quality of life in patients with painful bone metastases, treated with palliative radiotherapy within the randomized Dutch Bone Metastasis Study.The detailed course of quality of life after treatment was studied, as was the relation between a pain response and quality of life. Also prognostic factors predicting a pain response, psychological distress, side-effects and survival were studied. Show less
Arthropathies are the most common extra-intestinal manifestations of inflammatory bowel disease (IBD), affecting approximately 30% of patients. Symptoms may be debilitating and have a... Show moreArthropathies are the most common extra-intestinal manifestations of inflammatory bowel disease (IBD), affecting approximately 30% of patients. Symptoms may be debilitating and have a considerable impact on quality of life. IBD-associated arthropathies can be divided into inflammatory and non-inflammatory joint pain and may involve both axial and peripheral joints. Non-inflammatory joint pain, or arthralgia, is one of the most common complaint in daily IBD practice, but has not yet been studied systematically. For the gastroenterologist, joint/back pain can be challenging symptoms to diagnose and many have difficulties in differentiating arthralgia from arthritis. Since gastroenterologists are, in general, unfamiliar with the diagnosis and management of joint/back pain, it seems warranted that IBD joint complaints should be classified according to existing rheumatologic standards, thus allowing appropriate multi-disciplinary management. Show less
The thesis reports about the effects of music therapy with patients in the late stage of Huntington's disease. A literature review, a focus group study, a randomized controlled trial, an... Show moreThe thesis reports about the effects of music therapy with patients in the late stage of Huntington's disease. A literature review, a focus group study, a randomized controlled trial, an evaluation for complex interventions and a case report study are integrated in the thesis. The beneficial effects of music therapy could not be proven with the RCT-design and outcome measures that have been used. The beneficial effects of music therapy could not be proven with the RCT-design and outcome measures that have been used in the effect study. This outcome could imply that either music therapy is not effective in HD, or that the chosen study design or the primary endpoints (communication and expressive skills and behavior) were not appropriate to show the effectiveness of music therapy. A process evaluation of the RCT was executed to elucidate the results and to investigate how the study was performed. Show less
