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

Foucault and the Writing of the Self in Marcus Aurelius' Meditations

This paper explores Michel Foucault’s conception of the role of writing in what he calls the “arts of the self,” ancient Greek and Roman practices of self-transformation, understood as the modification of one’s thoughts and conduct in light of some particular ethical ideal. I proceed by first explicating Foucault’s 1983 text “Self Writing,” in which he analyses two such practices, the keeping of hupomnēmata, personal notebooks of quotations and reflections; and the writing of correspondence to others, in which one both offers advice and guidance and recounts the details of one’s daily life. I then move on to apply Foucault’s analyses to a text about which they are curiously silent: Marcus Aurelius’ Meditations. My broad goal is to offer a preliminary sketch of a Foucauldian genealogy of writing as an art of the self. I argue that, for Foucault, the role of writing in the arts of the self is primarily confessional, where “confession” is understood as a sub-category of the arts of the self whereby self-transformation is achieved through an enunciation that relates oneself to the truth. In the case of hupomnēmata and correspondence, this truth is that of a discourse which one gathers close at hand through the writing of hupomnēmata and enunciates through correspondence; in both cases, true discourse is “subjectivated,” i.e. becomes the truth of the individual who writes. The Meditations is crucial to a genealogy of these practices, because the text finds Marcus Aurelius engaged in both hupomnēmata and correspondence, and thereby shows them to be distinct but related aspects of the confessional process Foucault describes. I illustrate this through a close reading of select chapters that best evidence either practice. In the case of hupomnēmata, these are Marcus’ numerous direct citations of other texts; in the case of correspondence, these are chapters where Marcus directly addresses himself in regard to his particular life circumstances, i.e. establishes a correspondence of himself with himself

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

Disabling Wake Up Stroke without Lesions on Initial Diffusion Weighted Imaging - Case Report and Clinical Implications

An 86-year-old lady presented after waking up with left sided paresis and neglect. Right hemispheral stroke was suspected, but initial MRI with Diffusion Weighted Imaging (DWI) was negative and there was no large vessel occlusion. We accordingly withheld intravenous thrombolysis. She did not improve clinically and follow-up MRI after three days showed a marked lesion compatible with acute ischemic stroke in the right middle cerebral artery territory. This case shows that even with a disabling stroke in the anterior circulation initial DWI may be negative. Former studies established that thrombolysis can be safe in these cases when there is no doubt about the clinical diagnosis of acute ischemic stroke

Impact of withholding early parenteral nutrition completing enteral nutrition in pediatric critically ill patients (PEPaNIC trial): Study protocol for a randomized controlled trial

Background: The state-of-the-art nutrition used for critically ill children is based essentially on expert opinion and extrapolations from adult studies or on studies in non-critically ill children. In critically ill adults, withholding parenteral nutrition (PN) during the first week in ICU improved outcome, as compared with early supplementation of insufficient enteral nutrition (EN) with PN. We hypothesized that withholding PN in children early during critical illness reduces the incidence of new infections and accelerates recovery. Methods/Design: The Pediatric Early versus Late Parenteral Nutrition in Intensive Care Unit (PEPaNIC) study is an investigator-initiated, international, multicenter, randomized controlled trial (RCT) in three tertiary referral pediatric intensive care units (PICUs) in three countries on two continents. This study compares early versus late initiation of PN when EN fails to reach preset caloric targets in critically ill children. In the early-PN (control, standard of care) group, PN comprising glucose, lipids and amino acids is administered within the first days to reach the caloric target. In the late-PN (intervention) group, PN completing EN is only initiated beyond PICU-day 7, when EN fails. For both study groups, an early EN protocol is applied and micronutrients are administered intravenously. The primary assessor-blinded outcome measures are the incidence of new infections during PICU-stay and the duration of intensive care dependency. The sample size (n = 1,440, 720 per arm) was determined in order to detect a 5% absolute reduction in PICU infections, with at least 80% 1-tailed power (70% 2-tailed) and an alpha error rate of 5%. Based on the actual incidence of new PICU infections in the control group, the required sample size was confirmed at the time of an a priori- planned interim-analysis focusing on the incidence of new infections in the control group only. Discussion: Clinical evidence in favor of early administration of PN in critically ill children is currently lacking, despite potential benefit but also known side effects. This large international RCT will help physicians to gain more insight in the clinical effects of omitting PN during the first week of critical illness in children

Risk, Clinical Course, and Outcome of Ischemic Stroke in Patients Hospitalized With COVID-19: A Multicenter Cohort Study

BACKGROUND AND PURPOSE: The frequency of ischemic stroke in patients with coronavirus disease 2019 (COVID-19) varies in the current literature, and risk factors are unknown. We assessed the incidence, risk factors, and outcomes of acute ischemic stroke in hospitalized patients with COVID-19. METHODS: We included patients with a laboratory-confirmed SARS-CoV-2 (severe acute respiratory syndrome coronavirus-2) infection admitted in 16 Dutch hospitals participating in the international CAPACITY-COVID registry between March 1 and August 1, 2020. Patients were screened for the occurrence of acute ischemic stroke. We calculated the cumulative incidence of ischemic stroke and compared risk factors, cardiovascular complications, and in-hospital mortality in patients with and without ischemic stroke. RESULTS: We included 2147 patients with COVID-19, of whom 586 (27.3%) needed treatment at an intensive care unit. Thirty-eight patients (1.8%) had an ischemic stroke. Patients with stroke were older but did not differ in sex or cardiovascular risk factors. Median time between the onset of COVID-19 symptoms and diagnosis of stroke was 2 weeks. The incidence of ischemic stroke was higher among patients who were treated at an intensive care unit (16/586; 2.7% versus nonintensive care unit, 22/1561; 1.4%; P=0.039). Pulmonary embolism was more common in patients with (8/38; 21.1%) than in those without stroke (160/2109; 7.6%; adjusted risk ratio, 2.08 [95% CI, 1.52–2.84]). Twenty-seven patients with ischemic stroke (71.1%) died during admission or were functionally dependent at discharge. Patients with ischemic stroke were at a higher risk of in-hospital mortality (adjusted risk ratio, 1.56 [95% CI, 1.13–2.15]) than patients without stroke. CONCLUSIONS: In this multicenter cohort study, the cumulative incidence of acute ischemic stroke in hospitalized patients with COVID-19 was ≈2%, with a higher risk in patients treated at an intensive care unit. The majority of stroke patients had a poor outcome. The association between ischemic stroke and pulmonary embolism warrants further investigation

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