42 research outputs found

    Bewältigung eines schleichenden Hörverlusts : Erwartungen und Erfahrungen erwachsener, neuer Hörgerätenutzer ; eine anthropologische Untersuchung in Dänemark

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    The dissertation, ”Coping with emergent hearing loss”, is written in English and is based on the diversity of problems connected to hearing loss and the adaptation of hearing aids. The research was carried out in Denmark and involves adults with an emergent hearing loss, who have decided to become hearing aid users. The data is analyzed through methods of cultural anthropology with focus on the following topics: How do the new users cope with the status passage towards being hearing aid users, how do they integrate the hearing aids into their lives, and what are the involved learning processes. What are the consequences of the provision by the state of free hearing aids, their free adaptation as well as free batteries, and does the state take part in the construction of the social group of new hearing aid users? The method is based on qualitative field work. Two public hospitals were helpful in identifying 24 new users, who acquired a free hearing aid through the hearing health care system. Through ENTs and private dispensers 17 further respondents joined the study – these acquired their hearing aids with a considerable state subsidy but mostly they themselves contributed financially as well. The 41 respondents between the ages of 42 to 92 years of age came from a wide range of professions and were followed throughout 2003 und 2004. After an in-depth qualitative interview, the contact to the respondents was maintained in order to follow the process of integration into their lives. When possible, the respondents were accompanied to their appointments in the private or public clinics. Moreover, interviews with experts from the public hearing health care system, politicians and user organisations were carried out, and the general public debate on the hard of hearing and hearing loss was followed and recorded. The second chapter gives an overview of the position of audiology in Denmark, of epidemiological information on hearing loss in the Danish society and statistics to the use of hearing aids. Moreover, basic information is given about the functioning of the human ear, the auditive perception and diagnosis and classification of hearing loss as well as a short introduction to the hearing aid technology. The structure of the further thesis divides the material into three pillars that make the discussion of the interaction processes possible. (1) The user’s interaction with the lifeworld concerns the meaning of hearing in relation to social participation. For some of the users, a good sense of hearing was essential to communicate freely and uphold their position in relation to others, whereas other respondents paid less attention to the information they acquired through their sense of hearing. A number of the respondents were selective and only used their hearing aids in specific situations, whereas another group discontinued the use of their hearing aids for various reasons. Status passages that hold specific challenges like a new work place or a new marriage motivate the continued everyday use. On the whole, the thesis illustrates that hearing loss is a socially dividing factor that complicates the interaction with others. In comparison to other bodily impairments or diseases, the hearing loss is rarely used as occasion to unite with fellow sufferers, join patient organisations or form self help groups. (2) The users’ interaction with the institutions The medical anthropologist Arthur Kleinman conceptualises health care as a moral process in which essential issues are at stake for the users. Different factors interact in the process: the training of the experts, allocation of funds, the quality of the technology, the dispensing procedures and the motivation and individual characteristics of the new users. The integration of the hearing aid into the lifeworld can be compared to a learning process, for which reason the learning theory of the anthropologist Gregory Bateson is outlined. Susanne Bisgaard’s own theory lists the meaning creating elements that serve as motivation for the users to counteract contingency (occurrences that influence the adaptation negatively). In the interaction between individual and society, the individual can apply strategies in order to eliminate stumbling blocks. (3) The users’ interaction with the technology A number of theorists from Anthropology as well as Science and Technology Studies are discussed in order to question their validity with regard to human action autonomy vs. technological determination and test the theoretical models with regard to their usability for the thesis. Hearing aids have a supporting function in everyday life and have the capability of moderating the user’s perception of sound. The alienating experience of hearing one’s own voice amplified, of wearing a foreign body in the ear and the different strategies that emerge from the more or less successful handling of the technology is reported by way of case stories and quotes from the interviews.Die vorliegende in englischer Sprache verfasste Dissertation, „Coping with emergent hearing loss,“ entstand vor dem Hintergrund der Vielfalt der Probleme in Verbindung mit Schwerhörigkeit und der Anpassung von Hörgeräten. Die Recherchen der Arbeit sind in Dänemark durchgeführt worden. Es handlet sich um Erwachsenden mit einem beginnenden bzw. fortschreitenden Gehörverlust, die sich für ein Hörgerät entschieden haben. Die Gruppe der „neuen Hörgerätenutzer“ wird kulturanthropologisch auf drei Ebenen untersucht: Wie ändert sich der Status der Betroffenen und ihrer Angehörigen, und wie integrieren sie das Hörgerät in ihre Lebenswelt? Welche Bedeutung hat die Kostenübernahme des dänischen Gesundheitssystem für Geräte, Batterien und Anpassung und trägt diese Regelung zum Entstehen einer neuen Gruppe bei? Wie werden die Hörgeräte von ihren Nutzern angenommen und welche Lernprozesse sind dabei erforderlich? Die angewandte Methode ist qualitative Feldforschung. Über zwei öffentliche Krankenhäuser wurden 24 neue Nutzer gefunden, die im Rahmen der gesetzlichen Krankenversicherung ein kostenloses Hörgerät angepasst bekamen. Darüber hinaus gelang es 17 weitere Respondenten zu kontaktieren, die als Privatversicherte ihre Hörgeräte außerhalb des öffentlichen Gesundheitssektors erhielten. Die 41 Respondenten im Alter von 42 bis 92 Jahren repräsentierten eine weite Bandbreite von Berufen und wurden in den Jahren 2003 und 2004 begleitet. Nach einem ausführlichen qualitativen Interview wurde die Verbindung zu den Respondenten durch wiederholte Kontakte aufrechterhalten, um den Prozess der Einfügung des Hörgeräts in deren eigenes Leben mitvollziehen zu können. Soweit dieses möglich war, wurden die Untersuchungspersonen auch zu ihren Terminen im Krankenhaus bzw. im Hörgerätegeschäft begleitet. Zusätzlich wurden Interviews mit Experten aus dem öffentlichen Gesundheitssystem, mit Unternehmen und Geschäften, mit Politikern und Patientenorganisationen geführt sowie der gesellschaftliche Diskurs über Hörschädigungen und Schwerhörigkeit verfolgt. Das zweite Kapitel gibt einen Überblick über die Situation der Audiologie in Dänemark, epidemiologische Informationen zur Verbreitung von Schwerhörigkeit in der dänischen Bevölkerung und Statistiken zur Hörgeräteverbreitung und –nutzung. Außerdem werden grundlegende Informationen zur Funktion des menschlichen Ohrs, zur auditiven Wahrnehmung und zur Diagnose und Klassifikation von Gehörschädigungen dargestellt. Schließlich wird noch ein kurzer Überblick über die Hörgeräteakustik gegeben. Die Struktur der weiteren Arbeit besteht aus drei Säulen, die ermöglichen die Ebenen des Interaktionsprozesses zu thematisieren: (1) die Interaktion mit der Lebenswelt und der umgebenden Gesellschaft, wobei die Bedeutung des Hörens für die lebensweltliche Partizipation dargestellt wird. Das Spektrum reicht von Individuen, in deren Leben die soziale Teilhabe unbedingt ein gutes Gehör erfordert, um ausreichend kommunizieren zu können, bis hin zu Befragten, für die Informationen, die sie über das Gehör aufnehmen, eine verhältnismäßig geringe Wichtigkeit haben. Viele Befragte agieren selektiv und setzen das Hörgerät für bestimmte soziale Situationen ein, während es bei anderen nicht zum Einsatz kommt. Welche diese im Einzelnen sind, unterscheidet sich wiederum von Person zu Person. Statuspassagen, die besondere Herausforderungen beinhalten – eine neue Arbeitsstelle, eine neue Ehe – motivieren eher dazu, das Hörgerät dauerhaft im Alltag einzusetzen. Ins gesamt macht die Arbeit deutlich, dass Schwerhörigkeit ein sozial trennender Faktor ist, der die Interaktionen mit anderen erschwert. Im Unterschied zu anderen körperlichen Einschränkungen oder Krankheiten wird der Verlust des Gehörs von ihren Interviewpartnern selten als Anlass dafür genommen, sich mit Leidesgenossen zusammenzuschließen und Patientenorganisationen oder Selbst-hilfegruppen zu bilden. (2) die Interaktion mit den Institutionen Der Ansatz des Medizinanthropologen Arthur Kleinman konzeptualisiert den Verlauf im Gesundheitssystem als moralischen Prozess, in dem Entscheidendes für die Nutzer auf dem Spiel steht. Hier interagieren verschiedene Faktoren zu denen – neben der Ausbildung der Experten, der Zuteilung der Finanzmittel, der Qualität der Hörgerätetechnologie und der Organisation der Vergabe von Hörgeräten - insbesondere die Motivationen und Umgangsweisen der neuen Hörgerätenutzer zählen. Auch ist die Integration eines Hörgeräts mit einem Lernprozess zu vergleichen, und um diesen analysierbar zu machen, wird die Lerntheorie des Anthropologen Gregory Bateson herangezogen. Als eigene Theorie wird ein Instrumentarium entwickelt, das die sinnstiftenden Elemente darstellt, die als Motivation dienen, Kontingenz (Ereignisse, die die Anpassung negativ beeinfließen) entgegenzuwirken. Es geht um eine Wechselwirkung zwischen Gesellschaft und Individuum, wobei das Individuum auf Grund seiner Persönlichkeitszüge Strategien einsetzen kann, um Hindernisse zu beseitigen. Die Umgangsweisen der Respondenten mit den institutionellen Strukturen werden in fünf Kategorien unterteilt. Nur zwei Respondenten aus den Teilnehmern der Informantengruppe sind unkompliziert und haben nach Ausgabe des Gerätes keinen weiteren Bedarf nach institutioneller Betreuung. Die größte Gruppe von Respondenten (21 Personen) kehrt mindestens einmal zu Ausgabestelle zurück, weil Änderungen gemacht werden muss. Eine weitere Kategorie von den neuen Nutzern (4 Personen) verweigert relativ bald nach dem Erhalt die Nutzung. Eine Gruppe (9 Personen) verwendet eine passive Strategie ihrer Hörgeräte gegenüber und versucht nicht wirklich die Technologie in ihr Leben zu integrieren. Die letzte der eingekreisten Gruppen (5 Personen) umfasst die wirklichen Problem-fälle, bei denen es zu Beschwerden, Missverständnisse und Konflikten kamen. (3) die Interaktion zwischen Körperbildern und Technologien Hierzu werden eine Reihe von Autoren der Anthropologie und Science und Technology Studies miteinander ins Gespräch gebracht, um die Fragen von menschlicher Handlungsautonomie gegenüber der technologischen Determination zu diskutieren und theoretische Modelle auf ihre Nutzbarkeit für die vorliegende Arbeit hin zu befragen. Hörgeräte haben eine unterstützende Funktion im Alltagsleben der Nutzer, besitzen aber auch die Fähigkeit zu entscheiden wie der Nutzer welche Geräusche wahrnimmt und welche diese sind. Die befremdende Erfahrung der durch Lautsprecher verstärkten eigenen Stimme, die Erfahrung des Geräts als Fremdkörper im Ohr und die unterschiedlichen Umgangsweisen, die aus der mehr oder weniger geglückten Umgang mit der Technologie resultierten, sind anhand von Fallgeschichten und Äußerungen der Interviewten dargestellt

    Torborg Nedreaas’ short story collection Bak skapet står øksen (1945) and newpaper articles from the aftermath of the Second World War

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    I min masteroppgave undersøker jeg novellesamlingen Bak skapet står øksen (1945) av forfatteren Torborg Nedreaas. Mitt prosjekt vil bidra til økt forståelse av Nedreaas’ forfatterskap. Min tese er at novellesamlingen bidrar til å gi et nyansert bilde av tyskerjentenes situasjon i okkupasjonstiden. Jeg fremhever de unike mulighetene som ligger i novellesjangeren, og undersøker spesifikt hva de syv tyskerjentenovellene til Nedreaas formidler. De aktuelle novellene er «Stikk imot østavind», «Ellen», «Jeg skal ha revansje», «Mannen», «Kvinnlinger I», «Kvinnlinger II» og «Achtung, gnädiges Fräulein». Jeg benytter meg av novelleteorier av blant andre Asbjørn Aarseth, Lars Arild og Jørgen Haugan, samt Frank O`Connor. Utover dette har jeg undersøkt et bredt politisk og geografisk spekter med avisinnlegg som omtaler tyskerjentene publisert mellom mai 1945 og februar 1946, som en stikkprøve til samtidens syn på den stigmatiserte gruppen mennesker tyskerjentene representerte. Mine funn viser at de syv tyskerjentenovellene formidler mer barmhjertige innsikter enn de skribenter i avisene tar til orde for, til den impliserte leseren (jf. Booth). I sum formidler tyskerjentenovellene at tyskerjenter ikke kan dømmes likt og kjapt – uten å ta hensyn til de store individuelle forskjellene. Deretter oppfordrer den impliserte forfatter til refleksjon om seksualitet i krigstid. Nedreaas utløser refleksjon hos leseren ved å elegant kritisere den impliserte leserens forstålsesfellesskap som antakelig er fiendtlig innstilt til tyskerjentene. Jeg viser hvordan novellesjangeren er særlig godt egnet til å oppnå bedre forståelse for tyskerjentene som fenomen. Dermed blir leseren aktivert på en annen måte, enn passive avisinnlegg klarer. Novellesjangeren, her med Bak skapet står øksen som eksempel, skaper forståelse, refleksjon, innsikt og selverkjennelse, konkret gjennom novelletrekk som Arild og Haugans uhørte begivenhet, konflikt mellom to verdener og O'Connors sympati med en undertrykket befolkningsgruppe. Nedreaas var i ensomt selskap da hun i 1945 ga tyskerjentene flere ansikter og stemmer – slik skildrer hun de mange menneskelige sidene ved en nærmest umenneskeliggjort gruppe kvinner.This master thesis examines Bak skapet står øksen (1945), written by the Norwegian author Torborg Nedreaas. The project provides a greater understanding of Nedreaas’ authorship, in addition to a thorough analysis of the seven short stories about “tyskerjenter” (also referred to as “German drabs”). I argue that these short stories provide a nuanced understanding of Norwegian women’s situation during the war. I determine different possibilities within the short story genre and examine what Nedreaas’ seven short stories communicate. The short stories I analyse are «Stikk imot østavind», «Ellen», «Jeg skal ha revansje», «Mannen», «Kvinnlinger I», «Kvinnlinger II» and «Achtung, gnädiges Fräulein». I use short story theories developed by Asbjørn Aarseth, Lars Arild and Jørgen Haugan, as well as Frank O`Connor. Additionally, I have researched a broad-spectrum of politically and geographically different Norwegian newspapers, concerning “tyskerjenter”, published between May 1945 and February 1946, as a sample of the public’s view on the stigmatized group in this period. My research indicates that Nedreaas’ seven short stories have different impact on the implied reader (cf. Booth). To summarise, they demonstrate that no person can be judged jointly, their individuality must play a part. Additionally, the author encourages reflection on sexuality during war times. Nedreaas’ trigger the reader’s reflection by criticising the implied readers understanding, who are mostly hostile towards “tyskerjentene”. I reveal how the short story genre is specifically well suited to raise better understanding of “tyskerjentene” as a phenomenon. In contrast to other genres, the short story genre traditionally has room for interpretation, due to the frequent writing between the lines. This activates the reader in a different way than passive newspaper articles are able to. The short story genre, and Bak skapet står øksen specifically, creates understanding, reflection, insight and self-knowledge, through Goethe’s “unprecedented event”, conflict between two worlds and O'Connors’ sympathy for a submerged population group. Nedreaas recognised already in 1945 the dehumanised group of women labelled “tyskerjentene”. She gave them faces and voices like no other writer in a time filled with hatred.Mastergradsoppgave i nordisk språk og litteraturMAHF-NORDMAHF-LÆNONOLISP35

    The Dark Side of the Boom: The Peculiar Dilemma of Modern False Claims Act Litigation

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    Spurred by treble damages, substantial penalties, and lucrative relator awards, litigation under federal and state False Claims Act (“FCA”) statutes has exploded in recent years. Much of that explosion stems from aggressive and creative legal theories that challenge controversial industry practices or even well-known loopholes or waste in government policy. Evidence from governmental entities can be critically important in litigating these FCA claims. Unique aspects of False Claims Act actions, however, can aggravate the risk of losing this important evidence, leaving the parties, judges, and juries without the evidentiary record necessary to equitably adjudicate these disputes. Defendants can face the risk of treble damages, substantial penalties, or worse without the opportunity to build their defense before evidence is destroyed. Calling on his first-hand experience litigating FCA cases, the author highlights the risk of government spoliation in FCA cases and provides recommendations for courts and counsel to address this escalating problem

    Open destinies : modern American women and the short story cycle

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    This thesis examines the juncture between the short story cycle form and gender politics. It explores how twentieth-century women from the United States have been using the form to represent and question gender identity. The introduction outlines commentaries on the story cycle and considers definitions of the form. It includes case studies of earlier twentieth-century cycles by American women: cycles such as Mary McCarthy's The Company She Keeps that have been passed over by critics of the form. Chapter One presents Eudora Welty's The Golden Apples as a cycle paradigm, examining conventions such as the form's metafictional dimension and its preoccupation with communal identity. Chapter Two argues that Grace Paley's scattered Faith narratives set a standard for more dispersed versions of the form. Chapter Three considers how Joyce Carol Oates uses the sequential cycle to represent gender identity as a social construct. Chapters Four and Five examine the macrocosmic cycles of Gloria Naylor and Louise Erdrich and consider changes in their form and gender politics. The final 'composite' chapters explore postmodern versions of the form such as Susan Minot's Monkeys. The prose works of Sandra Cisneros stretch across the story cycle continuum, whilst Toni Morrison's Paradise is universally regarded as a novel. Readings of contemporary cycles by Melissa Bank, Elissa Schappell and Emily Carter demonstrate that American women are re-invigorating the form to facilitate the plural identity of the postmodern heroine

    Regioirregular and catalytic Mizoroki-Heck reactions

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    [EN] The palladium-catalysed cross-coupling reaction between alkenes and aryl halides (the Mizoroki-Heck reaction) is a powerful methodology to construct new carbon-carbon bonds. However, the success of this reaction is in part hampered by an extremely marked regioselectivity on the double bond, which dictates that electron-poor alkenes react exclusively on the beta-carbon. Here, we show that ligand-free, few-atom palladium clusters in solution catalyse the alpha-selective intramolecular Mizoroki-Heck coupling of iodoaryl cinnamates, and mechanistic studies support the formation of a sterically encumbered cinnamate-palladium cluster intermediate. Following this rationale, the alpha-selective intermolecular coupling of aryl iodides with styrenes is also achieved with palladium clusters encapsulated within fine-tuned and sterically restricted zeolite cavities to produce 1,1-bisarylethylenes, which are further engaged with aryl halides by a metal-free photoredox-catalysed coupling. These ligand-free methodologies significantly expand the chemical space of the Mizoroki-Heck coupling.This work was supported by MINECO (Spain, projects CTQ 2017-86735-P, PID2019-105391GB-C22 and MAT2017-82288-C2-1-P, Severo Ochoa programme SEV-2016-0683 and the Juan de la Cierva programme). F.G.-P. and R.G. thank ITQ for the concession of a contract. J.O.-M. acknowledges the Juan de la Cierva programme for the concession of a contract, and R.P.-R. and J.C.-S. thank the Plan GenT programme (CIDEGENT/2018/044) funded by Generalitat Valenciana. HR STEM measurements were performed at DME-UCA in Cadiz University, with financial support from FEDER/MINECO (PID2019-110018GA-I00 and PID2019-107578GA-I00). We acknowledge ALBA Synchrotron for allocating beamtime and CL AE SS beamline staff for their technical support during our experiment.Garnes-Portoles, F.; Greco, R.; Oliver-Meseguer, J.; Castellanos-Soriano, J.; Jiménez Molero, MC.; Lopez-Haro, M.; Hernández-Garrido, JC.... (2021). 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    National priorities for perioperative research in South Africa

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    BACKGROUND. Perioperative research is currently unco-ordinated in South Africa (SA), with no clear research agenda. OBJECTIVE. To determine the top ten national research priorities for perioperative research in SA. METHODS. A Delphi technique was used to establish consensus on the top ten research priorities. RESULTS. The top ten research priorities were as follows: (i) establishment of a national database of (a) critical care outcomes, and (b) critical care resources; (ii) a randomised controlled trial of preoperative B-type natriuretic peptide-guided medical therapy to decrease major adverse cardiac events following non-cardiac surgery; (iii) a national prospective observational study of the outcomes associated with paediatric surgical cases; (iv) a national observational study of maternal and fetal outcomes following operative delivery in SA; (v) a steppedwedge trial of an enhanced recovery after surgery programme for (a) surgery, (b) obstetrics, (c) emergency surgery, and (d) trauma surgery; (vi) a stepped-wedge trial of a surgical safety checklist on patient outcomes in SA; (vii) a prospective observational study of perioperativeoutcomes after surgery in district general hospitals in SA; (viii) short-course interventions to improve anaesthetic skills in rural doctors; (ix) studies of the efficacy of simulation training to improve (a) patient outcomes, (b) team dynamics, and (c) leadership; and (x) development and validation of a risk stratification tool for SA surgery based on the South African Surgical Outcomes Study (SASOS) data. CONCLUSIONS. These research priorities provide the structure for an intermediate-term research agenda.The workshop was funded by the Discipline of Anaesthesiology and Critical Care, University of KwaZulu-Natal.http://www.samj.org.zaam2016Anaesthesiolog

    Efficient rendering for three-dimensional displays

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    This thesis explores more efficient methods for visualizing point data sets on three-dimensional (3D) displays. Point data sets are used in many scientific applications, e.g. cosmological simulations. Visualizing these data sets in {3D} is desirable because it can more readily reveal structure and unknown phenomena. However, cutting-edge scientific point data sets are very large and producing/rendering even a single image is expensive. Furthermore, current literature suggests that the ideal number of views for 3D (multiview) displays can be in the hundreds, which compounds the costs. The accepted notion that many views are required for {3D} displays is challenged by carrying out a novel human factor trials study. The results suggest that humans are actually surprisingly insensitive to the number of viewpoints with regard to their task performance, when occlusion in the scene is not a dominant factor. Existing stereoscopic rendering algorithms can have high set-up costs which limits their use and none are tuned for uncorrelated {3D} point rendering. This thesis shows that it is possible to improve rendering speeds for a low number of views by perspective reprojection. The novelty in the approach described lies in delaying the reprojection and generation of the viewpoints until the fragment stage of the pipeline and streamlining the rendering pipeline for points only. Theoretical analysis suggests a fragment reprojection scheme will render at least 2.8 times faster than na\"{i}vely re-rendering the scene from multiple viewpoints. Building upon the fragment reprojection technique, further rendering performance is shown to be possible (at the cost of some rendering accuracy) by restricting the amount of reprojection required according to the stereoscopic resolution of the display. A significant benefit is that the scene depth can be mapped arbitrarily to the perceived depth range of the display at no extra cost than a single region mapping approach. Using an average case-study (rendering from a 500k points for a 9-view High Definition 3D display), theoretical analysis suggests that this new approach is capable of twice the performance gains than simply reprojecting every single fragment, and quantitative measures show the algorithm to be 5 times faster than a naïve rendering approach. Further detailed quantitative results, under varying scenarios, are provided and discussed

    A systematic review of outcomes reported inpediatric perioperative research: A report from the Pediatric Perioperative Outcomes Group

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    The Pediatric Perioperative Outcomes Group (PPOG) is an international collaborative of clinical investigators and clinicians within the subspecialty of pediatric anesthesiology and perioperative care which aims to use COMET (Core Outcomes Measures in Effectiveness Trials) methodology to develop core outcome sets for infants, children, and young people that are tailored to the priorities of the pediatric surgical population. Focusing on four age‐dependent patient subpopulations determined a priori for core outcome set development: (a) neonates and former preterm infants (up to 60 weeks postmenstrual age); (b) infants (>60 weeks postmenstrual age—1‐13‐<18 years), we conducted a systematic review of outcomes reported in perioperative studies that include participants within age‐dependent pediatric subpopulations. Our review of pediatric perioperative controlled trials published from 2008 to 2018 identified 724 articles reporting 3192 outcome measures. The proportion of published trials and the most frequently reported outcomes varied across predetermined age‐groups. Outcomes related to patient comfort, particularly pain and analgesic requirement, were the most frequent domain for infants, children, and adolescents. Clinical indicators, particularly cardiorespiratory or medication‐related adverse events, were the most common outcomes for neonates and infants <60 weeks and were the second most frequent domain at all other ages. Neonates and infants <60 weeks of age were significantly under‐represented in perioperative trials. Patient‐centered outcomes, healthcare utilization, and bleeding/transfusion‐related outcomes were less often reported. In most studies, outcomes were measured in the immediate perioperative period, with the duration often restricted to the postanesthesia care unit or the first 24 postoperative hours. The outcomes identified with this systematic review will be combined with patient‐centered outcomes identified through a subsequent stakeholder engagement study to arrive at a core outcome set for each age‐specific group

    Datengetriebene Stratifizierung von Patienten mit Parkinson-Krankheit anhand von Verlaufsdaten motorischer und kognitiver Kennzahlen der Erkrankung

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    Parkinson's disease (PD) is a progressive neurodegenerative movement disorder with a complex set of motor and non-motor symptoms and a diverse disease progression. Subtyping PD patients is required for personalized therapies but stratification approaches based on intermediate phenotypes such as clinical assessment scores lack reproducibility and stability, which is at least partially due to the broad spectrum of methods that can be applied during different steps of data processing. We propose a novel approach that considers the progression of detailed clinical assessment scores in different domains over a period of five years. Furthermore, we confirm the robustness of our subtypes with comparisons to subtypes that emerge when using different data pre-processing or another clustering algorithm. Three subtypes were found with differentiable symptoms: The motor-dominant subtype has the fastest progression and is most severely affected in daily life, closely followed by the sleep-dominant non-tremor subtype. The mild-motor subtype, in contrast, is characterized by moderate progression. These subtypes emerge from their progression pattern rather than from a snapshot during one time point. Hence we advocate for stratification approaches for PD subtyping that take longitudinal data over several years into account.Die Parkinson-Krankheit ist eine fortschreitende, neurodegenerative Erkrankung, die sich durch komplexe motorische und nicht-motorische Symptome sowie einen vielfältigen Krankheitsverlauf auszeichnet. Subtypisierung der Patienten ist für personalisierte Therapien notwendig, jedoch fehlt es an Stratifizierungsansätzen, die auf Zwischenphänotypen wie z.B. klinischen Tests aufsetzen, an Reproduzierbarkeit und Stabilität. Dies bedingt sich teilweise durch die vielen methodischen Möglichkeiten bei der Datenprozessierung. Wir schlagen einen neuen Ansatz vor, bei dem die Entwicklung detaillierter klinischer Kennwerte aus unterschiedlichen Domänen über einen Zeitraum von fünf Jahren betrachtet wird. Die Robustheit der so erhaltenen Subtypen untermauern wir mit Vergleichen zu Subtypen, die wir mit abweichender Datenprozessierung oder einem anderen Clustering-Algorithmus gewonnen hätten. Wir finden hier drei Subtypen mit differenzierbarer Symptomatik: Der motorisch-dominante Subtyp ist gekennzeichnet durch den raschesten Verfall und ist im täglichen Leben am stärksten betroffen, eng gefolgt vom Schlaf-dominanten non-Tremor Subtyp. Im Gegensatz dazu ist der Krankheitsverlauf des mild-motorischen Subtyps eher moderat. Diese Subtypen erwachsen aus den Verläufen ihrer komplexen Symptomatik und nicht aus Gruppenunterschieden während eines einzelnen Zeitpunkts. Deswegen plädieren wir dafür, für die Subtypisierung von Parkinson-Patienten Längsschnittdaten mehrerer Jahre zu verwenden
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