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

Towards Integrated Pest Management in East Africa : a feasibility study

Pesticide risk reduction through registration of less hazardous pesticides and the promotion of nonchemical pest and disease control approaches such as Integrated Pest Management (IPM) is essential for a more sustainable plant production in East Africa in order to enhance both export market access and food safety. This study gives guidance for the transition towards a further adoption of IPM in East Africa. It describes the current situation and presents the incentives for and obstacles to the East African countries. There are various initiatives to strengthen the institutional, economic, political and social aspects in the East African region. The East African Community (EAC) is working jointly on different themes, including agricultural development and reducing trade barriers. Also, in the field of pesticide legislation further steps should be made. A regional approach in establishing a framework for the registration of pesticides and bio pesticides and natural liquids would be a first step in creating the institutional environment to make actions more effective and efficient

SMART syndrome: a late reversible complication after radiation therapy for brain tumours

With intensified treatment leading to longer survival, complications of therapy for brain tumours are more frequently observed. Regarding radiation therapy, progressive and irreversible white matter disease with cognitive decline is most feared. We report on four patients with reversible clinical and radiological features occurring years after radiation for brain tumours, suggestive for the so called SMART syndrome (stroke-like migraine attacks after radiation therapy). All four patients (males, age 36–60 years) had been treated with focal brain radiation for a primary brain tumour or with whole-brain radiation therapy for brain metastases. Ranging from 2 to 10 years following radiation therapy patients presented with headache and focal neurological deficits, suggestive for tumour recurrence. Two patients also presented with focal seizures. MRI demonstrated typical cortical swelling and contrast enhancement, primarily in the parieto-occipital region. On follow-up both clinical and MRI features improved spontaneously. Three patients eventually proved to have tumour recurrence. The clinical and radiological picture of these patients is compatible with the SMART syndrome, a rare complication of radiation therapy which is probably under recognized in brain tumour patients. The pathophysiology of the SMART syndrome is poorly understood but bears similarities with the posterior reversible encephalopathy syndrome (PRES). These four cases underline that the SMART syndrome should be considered in patients formerly treated with radiation therapy for brain tumours, who present with new neurologic deficits. Before the diagnosis of SMART syndrome can be established other causes, such as local tumour recurrence, leptomeningeal disease or ischemic disease should be ruled out

The Pentagon Copying Test and the Clock Drawing Test as Prognostic Markers in Dementia with Lewy Bodies

Aims: To determine whether the pentagon copying test (PCT) and the clock drawing test (CDT) are associated with nursing home admission or survival in dementia with Lewy bodies (DLB). Methods: The PCT and/or the CDT were retrospectively collected from 103 clinically diagnosed probable DLB patients at a university medical center and general hospital. Patients with high versus low scores on these tests were compared. Results: Kaplan-Meier analysis showed that patients with a low score on the PCT had a shorter time to nursing home admission than patients with a high score (log-rank χ2 = 6.1, p = 0.01). Patients with a low score on the PCT or the CDT had a shorter survival than patients with a high score (log-rank χ2 = 5.4, p = 0.02, and log-rank χ2 = 11.2, p < 0.001, respectively). Cox regression analyses showed the same associations with an HR of 2.2 (95% CI 1.2–4.1) for the PCT and an HR of 2.9 (95% CI 1.6–5.4) for the CDT. Conclusion: The PCT and the CDT may function as prognostic markers in DLB. This finding is clinically relevant as these tests can be applied easily in the clinical setting and can provide valuable prognostic information. Furthermore, it may improve disease management and patient selection for research purposes

Routine gastric residual volume measurement and energy target achievement in the PICU: A comparison study

Critically ill children frequently fail to achieve adequate energy intake and some care practices, such as the measurement of gastric residual volume (GRV) may contribute to this problem. We compared outcomes in two similar European Pediatric Intensive Care Units (PICUs): one which routinely measures GRV (PICU-GRV) to one unit that does not (PICU-noGRV). An observational pilot comparison study was undertaken. 87 children were included in the study, 42 (PICU-GRV) and 45 (PICU-noGRV). There were no significant differences in the percentage of energy targets achieved in the first four days of PICU admission although PICU-noGRV showed more consistent delivery of median (and IQR) energy targets, and less under and over feeding for PICU-GRV and PICU-noGRV Day 1 37 (14-72) vs 44 (0-100); Day 2 97 (53-126) vs 100 (100-100), Day 3 84 (45-112) vs 100 (100-100) , Day 4 101 (63-124) vs 100 (100-100). The incidence of vomiting was higher in PICU-GRV. No necrotising enterocolitis was confirmed in either unit and ventilator acquired pneumonia rates were not significantly different (7.01 vs 12 5.31 per 1000 ventilator days; p=0.70) between PICU-GRV and PICU-noGRV units. Conclusions: The practice of routine gastric residual measurement did not significantly impair energy targets in the first four days of PICU admission. However, not measuring GRV did not increase vomiting, ventilator acquired pneumonia or necrotising enterocolitis, which is the main reason clinicians cite for measuring GRV. What is known?•The practice of routinely measuring gastric residual volume is widespread in critical care units•This practice is increasingly being questioned in critically ill patients, both as a practice that increases •the likelihood of delivering inadequate enteral nutrition amounts and as a tool to assess feeding tolerance What is new? •Not routinely measuring gastric residual volume did not increase adverse events of ventilator acquired pneumonia, necrotising enterocolitis or vomiting •In the first four days of PICU stay, energy target achievement was not significantly different, but the rates of under and over feeding were higher in the routine GRV measurement uni

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

Towards Integrated Pest Management in East Africa : a feasibility study

Pesticide risk reduction through registration of less hazardous pesticides and the promotion of nonchemical pest and disease control approaches such as Integrated Pest Management (IPM) is essential for a more sustainable plant production in East Africa in order to enhance both export market access and food safety. This study gives guidance for the transition towards a further adoption of IPM in East Africa. It describes the current situation and presents the incentives for and obstacles to the East African countries. There are various initiatives to strengthen the institutional, economic, political and social aspects in the East African region. The East African Community (EAC) is working jointly on different themes, including agricultural development and reducing trade barriers. Also, in the field of pesticide legislation further steps should be made. A regional approach in establishing a framework for the registration of pesticides and bio pesticides and natural liquids would be a first step in creating the institutional environment to make actions more effective and efficient

De bereiding van waterstofperoxide volgens het anthrachinon kringproces

Document(en) uit de collectie Chemische Procestechnologie.DelftChemTechApplied Science

Prolonged attacks of weakness with hypokalemia in SCN4A-related paramyotonia congenita

Item does not contain fulltex