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首页> 外文期刊>Neuromuscular disorders: NMD >Measurement properties and utility of performance-based outcome measures of physical functioning in individuals with facioscapulohumeral dystrophy - A systematic review and evidence synthesis
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Measurement properties and utility of performance-based outcome measures of physical functioning in individuals with facioscapulohumeral dystrophy - A systematic review and evidence synthesis

机译：具有面部育植物营养不良的个体物理功能的基于性能的结果测量和效用 - 一种系统审查和证据合成

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摘要

Access to reliable, valid, accurate and responsive outcome measures is essential to ensure standards of care and clinical trial readiness in facioscapulohumeral dystrophy. Review aims: 1. identify and provide a descriptive summary of all outcome measures used to measure physical function. 2. systematically appraise the evidence on measurement properties (reliability, construct validity, measurement error and responsiveness) of performance-based outcome measures of physical function in individuals diagnosed with facioscapulohumeral dystrophy. Selected electronic health-related databases were searched from inception - Feb 2019. Two authors independently screened studies for eligibility and extracted data for psychometric evidence. The methodological quality of outcome measure studies was appraised using the consensus-based standards for the selection of health measurement instruments (COSMIN) checklist. Of 12 identified outcome measures, four required high-technology equipment. Only three were FSHD specific. The FSH-clinical score had 'moderate' quality positive evidence for reliability. The remaining measures had 'low' to 'very low' quality evidence supporting properties of reliability, validity, responsiveness and measurement error. Identified studies tended towards low recruitment in middle-aged, ambulant individuals making results hard to generalise across lifespan and levels of severity. There is a paucity of measurement evidence supporting the use of outcome measures in people with facioscapulohumeral dystrophy. Crown Copyright (C) 2019 Published by Elsevier B.V. All rights reserved.
机译：获得可靠，有效，准确和响应的结果措施至关重要，以确保面部侧面植物营养不良症中的护理标准和临床试验性。审查宗旨：1。确定并提供用于测量物理功能的所有结果措施的描述性摘要。 2.系统地评估诊断患有面部型营养不良症的个体物理功能的基于性能的结果测量性能（可靠性，构建有效性，测量误差和响应性）的证据。从Inception搜索了所选电子健康相关数据库 - 2019年2月。两位作者独立筛选了资格研究，提取了对心理模切证据的数据。使用基于共识的标准来选择卫生测量仪器（COSMIN）清单，评估结果的方法论质量。在12个确定的结果措施中，四个必需的高科技设备。只有三个是fshd具体。 FSH临床评分具有“中等”质量的可靠性积极证据。其余措施与“非常低”的质量证据支持可靠性，有效性，响应性和测量误差的性能。确定的研究倾向于中年牧草个体的低招募，使得难以展示寿命和严重程度的结果。有缺乏缺乏面部型植物营养不良症的观察措施的测量证据。皇家版权（c）2019由elsevier b.v出版。保留所有权利。

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