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弗里德赖希共济失调影响量表:一种力求提供当今研究所需灵活性的新测量方法。

Friedreich's ataxia impact scale: a new measure striving to provide the flexibility required by today's studies.

作者信息

Cano Stefan J, Riazi Afsane, Schapira Anthony H V, Cooper J Mark, Hobart Jeremy C

机构信息

Neurological Outcome Measures Unit, Institute of Neurology, University College London, London, United Kingdom.

出版信息

Mov Disord. 2009 May 15;24(7):984-92. doi: 10.1002/mds.22420.

DOI:10.1002/mds.22420
PMID:19224613
Abstract

To develop, using modern techniques of rating scale construction, a new patient reported rating scale for clinical studies of Friedreich's ataxia (FA) that strives to meet the measurement needs of different types of study. Qualitative research methods were used to generate a conceptual framework of the impact of FA, and a pool of items necessary to construct a subscale for each area identified. This item pool was then administered to 492 people with FA. Rasch measurement methods guided scale construction. Eight areas for measurement were identified (speech, upper limb functioning, lower limb functioning, body movement, complex tasks, isolation, mood, self perceptions), and a 126-item scale constructed (FA Impact Scale; FAIS). In addition, three shorter versions were developed to illustrate how the FAIS can be adapted for observational studies, more disabled, and less disabled samples of people with FA. The FAIS is a psychometrically sound 126-item measure from which subsets of items can be selected to meet the needs of different studies. Importantly, all versions can be referred back to the original scale. This study shows one of the many clinical advantages of using Rasch measurement methods to construct rating scales.

摘要

运用现代量表构建技术,开发一种新的患者报告结局量表,用于弗里德赖希共济失调(FA)的临床研究,以满足不同类型研究的测量需求。采用定性研究方法生成FA影响的概念框架,并为确定的每个领域构建一个子量表所需的项目池。然后将该项目池应用于492名FA患者。采用拉施测量方法指导量表构建。确定了八个测量领域(言语、上肢功能、下肢功能、身体运动、复杂任务、社交隔离、情绪、自我认知),并构建了一个126项的量表(FA影响量表;FAIS)。此外,还开发了三个较短的版本,以说明FAIS如何适用于观察性研究、FA患者中残疾程度较高和较低的样本。FAIS是一种心理测量学上可靠的126项测量工具,可以从中选择项目子集以满足不同研究的需求。重要的是,所有版本都可以追溯到原始量表。本研究展示了使用拉施测量方法构建评定量表的众多临床优势之一。

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