Nederlands tijdschrift voor geneeskunde
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A rare disease usually concerns only a handful of patients, but all patients with a rare disease combined represent a significant health burden. Due to limited knowledge and the absence of treatment guidelines, patients with rare diseases usually experience delayed diagnosis and suboptimal treatment. Historically, rare diseases have never been considered a major health problem. ⋯ Two critical steps in optimising healthcare for rare diseases are developing multidisciplinary healthcare teams and stimulating patient empowerment. Optimal cooperation between patients, patient organisations, multidisciplinary healthcare teams and scientists is of great importance. In this respect, transition to adult healthcare requires special attention.
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Hospital standardized mortality ratios (HSMR) are meant to compare mortality risks between hospitals. There is, however, much discussion about the value of the HSMR because incomplete adjustment for case mix is almost inevitable and because the data required to estimate HSMR are often unreliable. ⋯ The number of factors that can influence mortality risk in a hospital for these 50 diagnoses is enormous. There are many potential explanations for an increased (or decreased) HSMR, meaning that even if an increased HSMR really does point towards an increased mortality risk, this provides no real indication of the underlying cause.
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Transient global amnesia is a recognised phenomenon in adults. However in children it is rarely described. It is characterised by a sudden loss of memory in an otherwise healthy patient. What is striking is that other cognitive functions and neurological examination are normal. ⋯ Transient global amnesia may occur in childhood. Since patients recover spontaneously, watchful waiting is justified.
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Ebola is an exceptionally risky infection and safety measures are therefore unprecedentedly strict. However, despite stringent measures infection of health care providers by the Ebola virus cannot be excluded. ⋯ Before undertaking care for Ebola patients, 'fit for the job'screening is necessary. We should only expose our care givers if we know that they are physically and mentally up to the task.
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Ned Tijdschr Geneeskd · Jan 2014
[The embarrassing lessons of Ebola: scientific knowledge comes too late].
The current Ebola epidemic in Western Africa painfully illustrates both the devastating power of a deadly virus once introduced into a severely compromised health care system, and the unpreparedness of Western countries to respond appropriately. After at least 3857 casualties there has still been hardly any scientific evaluation of therapeutic or preventive treatments. The first uncontrolled observations of a new cocktail of monoclonal antibodies look promising, but given the size of the epidemic, only large-scale vaccination might be sufficient for effective control.