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肌萎缩侧索硬化症自我报告问卷的测量特性：常用工具的系统评价和荟萃分析。

Measurement Properties of Self-Report Questionnaires for Amyotrophic Lateral Sclerosis: A Systematic Review and Meta-Analysis of Commonly Used Instruments.

机构信息

Department of Physiotherapy, Faculty of Health Science, Ampliacion de Campus de Teatinos, University of Malaga, C/Arquitecto Francisco Peñalosa 3, 29071 Malaga, Spain.

Department of Nursing and Physiotherapy, Faculty of Nursing and Physiotherapy, University of Cadiz, 11009 Cadiz, Spain.

出版信息

Int J Environ Res Public Health. 2023 Feb 14;20(4):3310. doi: 10.3390/ijerph20043310.

DOI:10.3390/ijerph20043310
PMID:36834005
原文链接:https://pmc.ncbi.nlm.nih.gov/articles/PMC9959245/
Abstract

(1) Background: Amyotrophic lateral sclerosis (ALS) is a neurodegenerative disease. There is no evidence on the analysis of the measurement instruments available to assess quality of life in these patients, following the consensus-based standards for the selection of health measurement instruments (COSMIN) checklist; (2) Methods: A systematic review was performed in PubMed, Embase, PEDro, Web of Science and Cochrane. The psychometric properties of the questionnaires were determined by using the COSMIN checklist. Two searches were carried out. This systematic review was registered in PROSPERO (CRD42021249005); (3) Results: There were four published articles that analysed the measurement properties in patients with ALS for the following scales: Amyotrophic Lateral Sclerosis Assessment Questionnaire 40, Amyotrophic Lateral Sclerosis-Specific Quality of Life Questionnaire, Short Form 36 Healthy Survey, Epworth Sleepiness Scale and Sickness Impact Profile. Another five scales also met the inclusion criteria: ALS-Depression-Inventory, State Trait Anxiety-Inventory, World Health Organization Quality of Life, Schedule for the Evaluation of Individual Quality of Life, Amyotrophic Lateral Sclerosis Assessment Questionnaire 5. Most Patient Reported Outcome Measures (PROMs) present a low-quality synthesis of evidence. It was observed an excellent pooled reliability of 0.92 (95% Confidence Interval: 0.83-0.96, I = 87.3%) for four dimensions for questionnaires ALSAQ-40. (4) Conclusions: There is little evidence on generic instruments. Future studies are necessary to develop new tools.

摘要

(1) 背景：肌萎缩侧索硬化症（ALS）是一种神经退行性疾病。根据基于共识的健康测量仪器选择标准（COSMIN）清单，目前尚无针对这些患者生活质量评估的可用测量仪器分析的证据；(2) 方法：在 PubMed、Embase、PEDro、Web of Science 和 Cochrane 中进行了系统评价。使用 COSMIN 清单确定问卷的心理测量特性。进行了两次搜索。本系统评价已在 PROSPERO（CRD42021249005）中注册；(3) 结果：有四篇已发表的文章分析了 ALS 患者以下量表的测量特性：肌萎缩侧索硬化评估问卷 40、肌萎缩侧索硬化症特异性生活质量问卷、短表单 36 健康调查、Epworth 嗜睡量表和疾病影响量表。另外五个量表也符合纳入标准：肌萎缩侧索硬化症抑郁量表、状态特质焦虑量表、世界卫生组织生活质量量表、个体生活质量评估量表、肌萎缩侧索硬化症评估问卷 5。大多数患者报告的结果测量（PROMs）的证据综合质量较低。观察到问卷 ALSAQ-40 的四个维度的综合可靠性非常好，为 0.92（95%置信区间：0.83-0.96，I = 87.3%）。(4) 结论：关于通用工具的证据很少。需要进一步的研究来开发新的工具。

https://cdn.ncbi.nlm.nih.gov/pmc/blobs/2311/9959245/68375ac9a7c3/ijerph-20-03310-g009.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/2311/9959245/020092d000af/ijerph-20-03310-g001.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/2311/9959245/22dd5131842a/ijerph-20-03310-g002.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/2311/9959245/0470929841e2/ijerph-20-03310-g003.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/2311/9959245/81bcfb7081aa/ijerph-20-03310-g004.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/2311/9959245/e2df031e775e/ijerph-20-03310-g005.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/2311/9959245/49e9686fbbbf/ijerph-20-03310-g006a.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/2311/9959245/90eeb6634cfa/ijerph-20-03310-g007.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/2311/9959245/1e8a96cddebe/ijerph-20-03310-g008.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/2311/9959245/68375ac9a7c3/ijerph-20-03310-g009.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/2311/9959245/020092d000af/ijerph-20-03310-g001.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/2311/9959245/22dd5131842a/ijerph-20-03310-g002.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/2311/9959245/0470929841e2/ijerph-20-03310-g003.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/2311/9959245/81bcfb7081aa/ijerph-20-03310-g004.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/2311/9959245/e2df031e775e/ijerph-20-03310-g005.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/2311/9959245/49e9686fbbbf/ijerph-20-03310-g006a.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/2311/9959245/90eeb6634cfa/ijerph-20-03310-g007.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/2311/9959245/1e8a96cddebe/ijerph-20-03310-g008.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/2311/9959245/68375ac9a7c3/ijerph-20-03310-g009.jpg

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Int J Environ Res Public Health. 2021 Jan 26;18(3):1074. doi: 10.3390/ijerph18031074.
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Measuring quality of life in Duchenne muscular dystrophy: a systematic review of the content and structural validity of commonly used instruments.测量杜氏肌营养不良症患者的生活质量：常用工具的内容和结构有效性的系统评价。
Health Qual Life Outcomes. 2020 Aug 3;18(1):263. doi: 10.1186/s12955-020-01511-z.
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肌萎缩侧索硬化症/运动神经元病患者生活质量的测量：世界卫生组织生活质量简表（WHOQOL-BREF）的效度验证
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J Neurosci Nurs. 2019 Oct;51(5):253-258. doi: 10.1097/JNN.0000000000000466.
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Muscle Nerve. 2019 Jul;60(1):47-55. doi: 10.1002/mus.26475. Epub 2019 Apr 2.
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COSMIN methodology for evaluating the content validity of patient-reported outcome measures: a Delphi study.COSMIN 方法学用于评估患者报告结局测量的内容效度：一项德尔菲研究。
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