232 research outputs found
Primary hyperoxaluria type 1: practical and ethical issues
No full textPrimary hyperoxaluria type 1 (PH1) is a rare inborn error of glyoxylate metabolism of autosomal recessive inheritance, leading to progressive systemic oxalate storage (named 'oxalosis') with a high rate of morbidity and mortality, as well as an unacceptable quality of life for most patients. The adverse outcome, however, is partly due to issues that can be overcome. First, the diagnosis of PH is often delayed due to a general lack of knowledge of the disease among physicians. This accounts specifically for patients with pyridoxine sensitive PH, a group that is paradoxically most easy to treat. Second, lack of adherence to a strict conduction of conservative treatment and optimal urological management may enhance an adverse outcome of the disease. Third, specific techniques to establish PH1 and specific therapies are currently often not available in several low-resources countries with a high prevalence of PH. The management of patients with advanced disease is extremely difficult and warrants a tailor-made approach in most cases. Comprehensive programs for education of local physicians, installation of national centers of expertise, European support of low-resources countries for the management of PH patients and intensified international collaboration on the management of current patients, as well as on conduction of clinical studies, may further improve outcome of P
Quality of care and monitoring in paediatric end stage renal disease
No full textIn this thesis quality of care and monitoring of chronic kidney disease - mineral bone disorder (CKD-MBD) and cardiovascular disease (CVD) is assessed. Practices and policies with regards to transplantation, growth hormone and hypertension are inventories and compared with current guidelines and literature. Since end stage renal disease (ESRD) in childhood is rare, large scale studies are scarce. Differences in policies might be caused by a lack of evidence based guidelines, possibly affecting health outcome. More research on the outcome of children with end stage renal disease seems warranted in order to produce uniform guidelines enabling the same treatment and outcome for each child, independently of where the child is being treated. Next, current methods of imaging of CKD-MBD and CVD are evaluated. Dual Energy X-ray Absorptiometry (DXA) seems unreliable for detecting and predicting CKD-MBD in patients with childhood onset ESRD. Children with ESRD show an impaired function of the left ventricle measured with Speckle Tracking Echocardiography (STE), without abnormal function as assessed with conventional echocardiography, showing that STE could be a reliable method to detect CVD. Finally, the effect of a quality improvement collaborative on quality of care (QOC) is assessed. A ceiling might have been reached with regards to QOC. This is possibly due to the fact that certain factors are present which cannot be influenced by the doctors or nurses
Patient reported and clinical outcomes in paediatric end stage renal disease: Understanding factors affecting quality of life, access to transplantation and mortality
No full textThis thesis addresses to what extent end stage renal disease (ESRD) and its treatment affects quality of life and social functioning in paediatric patients. Special emphasis is placed on the role of demographic and medical factors. Secondly, we studied the very long-term psychosocial outcomes of almost 30 years of renal replacement therapy (RRT) in adult patients with paediatric onset of ESRD. Finally, this thesis describes the influence of racial background on medical outcomes among children with ESRD in Europe. We aimed: 1. to provide an overview of the current knowledge on health related quality of life (HRQoL) in children with ESRD and to evaluate different methods used to measure HRQoL in this specific patient group. 2. to assess the impact of ESRD and its treatment on the lives of children with ESRD, using different questionnaires (i.e. utility based questionnaires and generic instruments). Special emphasis was put on the role of demographic and medical factors associated with HRQoL. 3. to study the impact of 30 years of RRT since childhood on HRQoL and socioprofessional functioning in adulthood. 4. to investigate the association between ethnic background and important treatment outcomes among European children with ESRD
Smarter energy sharing
No full textThis thesis proposes a product-service-system for Lens-Energie bv. Lens is a Dutch company that provides solar panels to renters in apartment buildings. Their current product benefits from the current net-metering legislation in the Netherlands. Since its is expected that this legislation will be changed in the near future, a new product is required. The financial benefit of feeding electricity back into the grid will be significant lower under the expected new legislation. A future proof product or system allows these renters to use their own generated electricity rather than selling it back to the grid. The process consists out of four phases: Analysis, Ideation, Conceptualization & Implementation In the analysis phase, an internal analysis of the company and the market was performed. This showed that the current competitive position of Lens is strong but not sustainable because of the dependence on the net-metering legislation. An external analysis on technology showed how Demand Side Management can limit the share of generated energy that has to be fed back into the grid by using buffers and so-called timeshifters. These buffers include home battery systems, electrical vehicles and heat pumps, while the timeshifters include white goods like smart washing machines, dryers and dishwashers. A SWOT analysis showed how this leads to opportunities for Lens to build a product-service-system with demand side management. In the Ideation phase, four different conceptual product-technical-systems were designed: a battery system, a timeshifter system, a heat-pump system and an electric vehicle system. Besides their technical performance in buffering or time shifting, they were assessed on their business potential. This was done by a stakeholder analysis. In the stakeholder analysis, the needs and assets of the different network actors per product-technical-system were mapped and matched. This showed different synergies per product-technical-system. The synergies from the timeshifter system showed the highest business potential for Lens and was therefore selected for further development. A user study led to the desired interaction between the user and the system. This also showed the need for a central service provider. In the Conceptualization phase, the service and the business model of the PSS were designed. Service blueprints showed show how Lens and the other network actors need to collaborate to deliver the right service and user experience in challenging situations. The business model was subsequently designed along four characteristics: Network actors, Customer value proposition, Key processes and Profit formulas. This resulted in a comprehensive business model with four revenue streams: leasing PV-systems, leasing white goods, data sales and offering additional products and services. In the Implementation phase, the PSS was analyzed. The risks were identified and an implementation plan was developed. A stage gate model in this implementation plan limits the risk of costs getting out of control by providing clear go/no-go evaluation points in the development. The evaluation suggests that further implementation of the product-service-system can provide a sustainable competitive advantage for Lens.Industrial Design EngineeringProduct Innovation Managemen
End-stage renal disease in children: management, outcomes, improvement of care
No full textMarieke Tromp onderzocht de behandelstrategieën en uitkomsten van de zorg voor kinderen met een levensbedreigende vorm van nierfalen in Nederland en België. Deze kinderen worden in tien centra in Nederland en België behandeld. Tussen die centra bestaan grote verschillen; er zijn weinig richtlijnen voor kinderen die nierdialyse krijgen of een transplantatie. Aan slechts zeven procent van de aanbevelingen ligt wetenschappelijk bewijs ten grondslag. Niet-westerse kinderen worden minder snel getransplanteerd en hebben daardoor langer dialyse nodig. Tromp vond geen betrouwbare methode om bij kinderen met een ernstige nierziekte in een vroeg stadium hart- en vaatziekten op te sporen
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