74 research outputs found

    The anemia-independent impact of myelodysplastic syndromes on health-related quality of life

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    Myelodysplastic syndromes (MDS) are in the majority of cases characterized by anemia. Both anemia and MDS per se may directly contribute to impairments in health-related quality of life (HRQoL). In this study, we aimed to investigate the anemia-independent impact of MDS on HRQoL. We evaluated participants (≥ 50 years) from the large population-based Lifelines cohort (N = 44,694, mean age 59.0 ± 7.4 years, 43.6% male) and the European MDS Registry (EUMDS) (N = 1538, mean age 73.4 ± 9.0 years, 63.0% male), which comprises a cohort of lower-risk MDS patients. To enable comparison concerning HRQoL, SF-36 scores measured in Lifelines were converted to EQ-5D-3L index (range 0-1) and dimension scores. Lower-risk MDS patients had significantly lower HRQoL than those from the Lifelines cohort, as illustrated in both the index score and in the five different dimensions. Multivariable linear regression analysis demonstrated that MDS had an adjusted total impact on the EQ-5D index score (B =  - 0.12, p < 0.001) and an anemia-independent "direct" impact (B =  - 0.10, p < 0.001). Multivariable logistic regression analysis revealed an anemia-independent impact of MDS in the dimension mobility, self-care, usual activities, and anxiety/depression (all except pain/discomfort). This study demonstrates that the major part of the negative impact of lower-risk MDS on HRQoL is not mediated via anemia. Thus, the therapeutic focus should include treatment strategies directed at underlying pathogenic mechanisms to improve HRQoL, rather than aiming predominantly at increasing hemoglobin levels

    Down syndrome and aberrant right subclavian artery

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    Down syndrome (DS) may be associated with various organ system disorders. Feeding problems are frequent in children with DS and may be caused by associated defects, including congenital heart defects, gastrointestinal defects, or endocrine disorders. In the absence of these associated conditions, feeding problems are often attributed to general hypotonia. However, an aberrant right subclavian artery (ARSA), a rare vascular anomaly and an unusual cause of problems with the passage of solid food through the esophagus, has recently been suggested to occur more frequently in patients with DS. This knowledge is of importance when evaluating feeding difficulties in patients with DS. Additional investigation for identifying an ARSA may be indicated in selected patients. Diagnostic techniques, such as transthoracic echocardiography, barium contrast esophagram, angiography, or computed tomography–angiography (CT) can be used in a diagnostic flow chart. The presence of ARSA is not synonymous to the cause of feeding problems in patients with DS and corrective surgery of this vascular anomaly should be restricted to selected cases

    The anemia-independent impact of myelodysplastic syndromes on health-related quality of life

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    Myelodysplastic syndromes (MDS) are in the majority of cases characterized by anemia. Both anemia and MDS per se may directly contribute to impairments in health-related quality of life (HRQoL). In this study, we aimed to investigate the anemia-independent impact of MDS on HRQoL. We evaluated participants (≥ 50 years) from the large population-based Lifelines cohort (N = 44,694, mean age 59.0 ± 7.4 years, 43.6% male) and the European MDS Registry (EUMDS) (N = 1538, mean age 73.4 ± 9.0 years, 63.0% male), which comprises a cohort of lower-risk MDS patients. To enable comparison concerning HRQoL, SF-36 scores measured in Lifelines were converted to EQ-5D-3L index (range 0-1) and dimension scores. Lower-risk MDS patients had significantly lower HRQoL than those from the Lifelines cohort, as illustrated in both the index score and in the five different dimensions. Multivariable linear regression analysis demonstrated that MDS had an adjusted total impact on the EQ-5D index score (B =  - 0.12, p < 0.001) and an anemia-independent "direct" impact (B =  - 0.10, p < 0.001). Multivariable logistic regression analysis revealed an anemia-independent impact of MDS in the dimension mobility, self-care, usual activities, and anxiety/depression (all except pain/discomfort). This study demonstrates that the major part of the negative impact of lower-risk MDS on HRQoL is not mediated via anemia. Thus, the therapeutic focus should include treatment strategies directed at underlying pathogenic mechanisms to improve HRQoL, rather than aiming predominantly at increasing hemoglobin levels

    Herbal supplements in the print media: communicating benefits and risks

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    Background The rise in use of food supplements based on botanical ingredients (herbal supplements) is depicted as part of a trend empowering consumers to manage their day-to-day health needs, which presupposes access to clear and accurate information to make effective choices. Evidence regarding herbal supplement efficacy is extremely variable so recent regulations eliminating unsubstantiated claims about potential effects leave producers able to provide very little information about their products. Medical practitioners are rarely educated about herbal supplements and most users learn about them via word-of-mouth, allowing dangerous misconceptions to thrive, chief among them the assumption that natural products are inherently safe. Print media is prolific among the information channels still able to freely discuss herbal supplements. Method This study thematically analyses how 76 newspaper/magazine articles from the UK, Romania and Italy portray the potential risks and benefits of herbal supplements. Results Most articles referenced both risks and benefits and were factually accurate but often lacked context and impartiality. More telling was how the risks and benefits were framed in service of a chosen narrative, the paucity of authoritative information allowing journalists leeway to recontextualise herbal supplements in ways that serviced the goals and values of their specific publications and readerships. Conclusion Providing sufficient information to empower consumers should not be the responsibility of print media, instead an accessible source of objective information is required.</p

    E-learning for the Austrian pharmacy apprentice: a comparative study of linear text vs. hypermedia interface program design and delivery

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    Zsfassung in dt. SpracheDiese Forschung und die damit zusammenhängende Dissertation wurde entwickelt um einzelne Punkte im Zusammenhang mit elektronischen Lernprogrammen zur Berufsausbildung von Lehrlingen, im näheren Apothekenlehrlinge, genauer zu diskutieren und zu erörtern. Lokale und internationale Organisationen tragen durch fortwährende Finanzierungen und Reformen einen großen Beitrag zur Unterstützung von elearning und Technologiebasierendem Lernen bei. Aus diesem Grund einerseits, und dem zusätzlichen Mangel an spezifischen Lernprogrammen für Lehrlinge andererseits, konzentriert sich diese Studie auf die Entwicklung von effizientem e-learning für einzelne relevante Lernbedürfnisse.Die durchgeführte Forschungsstudie vergleicht den Bezug von zwei verschiedenen elearning Methoden für Apothekenlehrlinge und beantwortet die dazugehörigen Fragen. Welches elearning Design und welche Bezugsmethode ist für österreichische Apothekenlehrlinge besser geeignet: Ein Lineartext, oder ein Hypermedia Programm? Beide elearning Programme beschäftigen sich mit Methoden für angemessene Kundengespräche und haben denselben Inhalt. Das erste Programm ist ein auf PDF basierter Lineartext, das zweite Programm ist ein interaktives und auf Hypermedia basierendes Programm, mit Verwendung von Hypertext.The following research and dissertation has been developed around discussion concerning electronic learning programs for vocational education students, particularly pharmacy apprentices.22

    'Building Bridges' zwischen Evidenz und Gesundheitspolitik

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    Metrics to improve control in outsourcing software development projects

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    Measurements serve as vital instruments to control projects involving software development outsourcing. However, managers have found it difficult to develop and implement effective measurement programs, in part because guidelines for choosing among concrete measure-ments are scarce. We address this gap between research and practice by examining frame-works and guidelines in the software process improvement literature. Our contribution com-prises a framework that provides a set of measurements (selected from the research litera-ture) for control of software development in a cooperative setting and a set of principles and guidelines for the design of an information infrastructure that provides managers with control information. We have validated our approach by showing our framework to an expert in out-sourcing projects, who confirmed its potential

    Muted diatom responses to recent environmental change on the southeast Tibetan Plateau during the last two centuries.

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    A general mean annual temperature increase accompanied with substantial glacial retreat has been noted on the Tibetan Plateau during the last two centuries but most significantly since the mid 1950s. These climate trends are particularly apparent on the southeastern Tibetan Plateau. However, the Tibetan Plateau (due to its heterogeneous mountain landscape) has very complex and spatially differing temperature and precipitations patterns. As a result, intensive palaeolimnological investigations are necessary to decipher these climatic patterns and to understand ecological responses to recent environmental change. Here we present palaeolimnological results from a Pb-210/Cs-137-dated sediment core spanning approximately the last 200 years from a remote high-mountain lake (LC6 Lake, working name) on the southeastern Tibetan Plateau. Sediment profiles of diatoms, organic variables (TOC, C:N) and grain size were investigated. The Pb-210 record suggests a period of rapid sedimentation, which might be linked to major tectonic events in the region ca. 1950. Furthermore, unusually high Pb-210 supply rates over the last 50 years suggest that the lake has possibly been subjected to increasing precipitation rates, sediment focussing and/or increased spring thaw. The majority of diatom taxa encountered in the core are typical of slightly acidic to circumneutral, oligotrophic, electrolyte-poor lakes. Diatom species assemblages were rich, and dominated by Cyclotella sp., Achnanthes sp., Aulacoseira sp. and fragilarioid taxa. Diatom compositional change was minimal over the 200-year period (DCCA = 0.85 SD, p = 0.59); only a slightly more diverse but unstable diatom assemblage was recorded during the past 50 years. The results indicate that large-scale environmental changes recorded in the twentieth century (i.e. increased precipitation and temperatures) are likely having an affect on the LC6 Lake, but so far these impacts are more apparent on the lake geochemistry than on the diatom flora. Local and/or regional peculiarities, such as increasing precipitation and cloud cover, or localized climatic phenomena, such as negative climate feedbacks, might have offset the effects of increasing mean surface temperatures
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