1,721,003 research outputs found
Cross-cultural validation of the integrated palliative outcome scale for neurological patients (IPOS-Neuro S8) in multiple sclerosis patients
No full textAbstract Objectives Standardized measures to evaluate neurological patients in palliative care are missing. The Integrated Palliative Outcome Scale, a self-report tailored for neurological patients (IPOS Neuro-S8) helps identify symptom burden but lacks validation in German. This study aimed to validate the IPOS Neuro-S8 in severely affected multiple sclerosis (MS) patients. Methods This validation study is a secondary analysis of data from a clinical phase II intervention study with severely affected MS patients. The original study enrolled German-speaking patients aged 18 with severe MS who receive an escalating immunotherapeutic agent and/or exhibit a high level of disability were recruited from the administrative district Cologne (#DRKS00021783). In this validation study, we evaluated construct, discriminant, and convergent validity, internal consistency, test–retest reliability, and sensitivity to change of the IPOS Neuro-S8, using the “Hamburger Lebensqualitätsmessinstrument” (HALEMS), and the Hospice and Palliative Care Evaluation supplemented by neurological symptoms (HOPE+) as comparison measures. Results Data from 80 MS patients (mean age 56, SD = 11) were analyzed. Exploratory and confirmatory factor analyses revealed a 3-factor structure ( r = 0.34–0.63), reflecting distinct clinical patterns, i.e., breath-mouth connection, pain-sleep cycle , and nausea-vomiting link . Significant convergent validity to hypothesized total score of the HOPE+ ( r s (78) = 0.71, p < 0.001) and good discriminant validity using the HALEMS total score ( r s (78) = 0.48, p < 0.001) were observed. Correlation with physical symptoms of the HALEMS was stronger than with nonphysical aspects. Internal consistency (Cronbach’s α = 0.67) and test–retest reliability (intraclass coefficient = 0.75) were acceptable. Significance of results IPOS Neuro-S8 displays promising psychometric properties for assessing palliative care symptoms in severe MS, a model for other severe neurological diseases due to MS's broad central nervous involvement, allowing findings to be transferable to other neurological diseases. A criterion for minimal clinically important difference was established to evaluate the sensitivity to change. Additional validation across different neurological conditions and disease severities is warranted to enhance generalizability and clinical utility
Measuring health-related quality of life in Huntingtons' disease
No full textHuntington's Disease (HD) is a fatal, neurodegenerative disease for which there is no known cure. The thesis describes the impact of Huntington's disease on health-related quality of life and reports the development and validation of the first disease specific questionnaire HDQ-D2 with established psychometric measurement properties which address the aspects of quality of life considered important to persons living with Huntington's disease. Literature review revealed that studies have relied on various generic health and quality of life instruments to measure patient experiences of living with HD. Generic instruments may not capture the reality of living with HD, address its specific aspects and measure its effect on the quality of life of persons sufficiently. A disease specific health-related quality of life (HRQOL) instrument may facilitate research into HRQOL in HD. The 40-item HDQ-D2 was developed on the basis of experiences of persons living with HD and consequently covers areas of concern which are of particular importance to this group. The development and validation process comprised three stages. In-depth interviews with 31 persons living with HD generated items for the item selection questionnaire (HDQ-D1). The 81-HDQ-D1 was administered to 313 persons living with HD in twelve different countries to select 40 items for HDQ-D2. Following pre-testing and pilot testing, the 40- item HDQ-D2 was administered to 261 persons living with HD for psychometric evaluation and assessment of measurement properties. Qualitative data was analysed systematically and sequentially. Statistical analysis of the HDQ-D1 and HDQ-D2 data utilized methods of Classical Test Theory and Item Response Theory in triangulation. The 40-item HDQ-D2 covers six key aspects of HRQOL of persons living with HD: cognitive, hopes and worries, services, physical and functional, mood state, self and vitality. It is an acceptable, reliable and valid instrument to measure the extent of impact of HD on the quality of life of persons living with the condition. HDQ-D2 as an instrument can be used for evaluation as well as for research and practice innovation. HDQ-D2 has three primary, six specific and an summary index scales. Thirty-eight of its items can be used to calculate six specific profile scores; thirty-five of its items can be used to calculate three primary profile scores; and twenty-one of its items can be used to calculate a summary index score. The primary and specific profile scores are useful for measuring the impact of interventions upon particular areas of HRQOL and the summary index score is relevant for evaluation of the overall effect of interventions on HRQOL. The development of HOQ-02 provides the option of using psychometrically based patient-generated questionnaires to measure quality of life of persons living with HO. The study contributed to the body of knowledge by designing the first disease specific instrument for measuring health-related quality of life in persons living with HO. For this reason, this newly developed disease specific HRQOL instrument for persons living with HO is a unique contribution to patient reported outcomes research and tools.EThOS - Electronic Theses Online ServiceGBUnited Kingdo
Going Beyond Counting First Authors in Author Co-citation Analysis
Get PDFThe present study examines one of the fundamental aspects of author co-citation analysis (ACA) - the way co-citation
counts are defined. Co-citation counting provides the data on which all subsequent statistical analyses and mappings
are based, and we compare ACA results based on two different types of co-citation counting - the traditional type that
only counts the first one among a cited work's authors on the one hand and a non-traditional type that takes into
account the first 5 authors of a cited work on the other hand. Results indicate that the picture produced through this non-traditional author co-citation counting contains more coherent author groups and is therefore considerably clearer. However, this picture represents fewer specialties in the research field being studied than that produced through the traditional first-author co-citation counting when the same number of top-ranked authors is selected and analyzed. Reasons for these effects are discussed
Variations on the Author
Get PDF“Variations on the Author” discusses two of Eduardo Coutinho’s recent films (Um Dia na Vida, from 2010, and Últimas Conversas, posthumously released in 2015) and their contribution to the general question of documentary authorship. The director’s filmography is characterized by a consistent yet self-effacing form of authorial self-inscription: Coutinho often features as an interviewer that rather than express opinions propels discourses; an interviewer that is good at listening. This mode of self-inscription characterizes him as an author who is not expressive but who is nonetheless markedly present on the screen. In Um Dia na Vida, however, Coutinho is completely absent form the image, while Últimas Conversas, on the contrary, includes a confessional prologue that moves the director from the margins to the center of his films. This article examines the ways in which these works stand out in the filmography of a director who offers new insights into the notion of cinematic authorship
Appropriate Similarity Measures for Author Cocitation Analysis
Get PDFWe provide a number of new insights into the methodological discussion about author cocitation analysis. We first argue that the use of the Pearson correlation for measuring the similarity between authors’ cocitation profiles is not very satisfactory. We then discuss what kind of similarity measures may be used as an alternative to the Pearson correlation. We consider three similarity measures in particular. One is the well-known cosine. The other two similarity measures have not been used before in the bibliometric literature. Finally, we show by means of an example that our findings have a high practical relevance.information science;Pearson correlation;cosine;similarity measure;author cocitation analysis
Dispelling the Myths Behind First-author Citation Counts
Get PDFWe conducted a full-scale evaluative citation analysis study of scholars in the XML research field to explore just how different from each other author rankings resulting from different citation counting methods actually are, and to demonstrate the capability of emerging data and tools on the Web in supporting more realistic citation counting methods. Our results contest some common arguments for the continued
use of first-author citation counts in the evaluation of scholars, such as high correlations between author rankings by first-author citation counts and other citation
counting methods, and high costs of using more realistic citation counting methods that are not well-supported by the ISI databases. It is argued that increasingly available digital full text research papers make it possible for citation analysis studies to go beyond what the ISI databases have directly supported and to employ more
sophisticated methods
koamabayili/VECTRON-author-checklist: VECTRON author checklist
No full textWe have done our best to complete the author checklist relating to the use of animals in the hut study. Note that the objective for the hut study was to evaluate the IRS treatment applications for residual efficacy against Anopheles mosquitoes, including the local An. coluzzii mosquito population. Cows were only used to attract mosquitoes into the huts and no tests were carried out directly on the cows. The author checklist is intended for use with studies where experiments are carried out on animals, which is why we have had such difficulty in completing this for the hut study, as many of the questions do not relate to how the cows were used
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