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上肢模块在杜氏肌营养不良症中的表现。

Performance of Upper Limb module for Duchenne muscular dystrophy.

机构信息

The John Walton Muscular Dystrophy Research Centre, Institute of Genetic Medicine, Newcastle University and Newcastle Hospitals NHS Foundation Trust, Newcastle upon Tyne, UK.

Child Neurology Unit e Centro Nemo, IRCCS Fondazione Policlinico Gemelli, Università Cattolica del Sacro Cuore, Rome, Italy.

出版信息

Dev Med Child Neurol. 2020 May;62(5):633-639. doi: 10.1111/dmcn.14361. Epub 2019 Sep 19.

Abstract

AIM

To report the differences between Performance of Upper Limb (PUL) versions 1.2 and 2.0, compare the measurement ability of the two versions, and compare their longitudinal performance in Duchenne muscular dystrophy.

METHOD

Rasch analysis was performed on the dual data from three centres to confirm whether the two scales measure the same construct. Change scores in natural history for the different domains were compared for the two versions.

RESULTS

Rasch analysis demonstrated that both versions measure the same construct and that the PUL 2.0 was a better fit to the construct of motor performance and better able to detect change at 12 months in all levels of ability than the PUL 1.2. This was also true when change scores were reviewed over 2 years.

INTERPRETATION

Our results confirm that the PUL 1.2 and 2.0 versions detect change in all domains over 2 years. They also demonstrate that simplifying the original scoring of the PUL 1.2 for the revised PUL 2.0 maintains the validity of the construct and enhances the scale measurement qualities.

WHAT THIS PAPER ADDS

The original and revised Performance of Upper Limb (PUL) scales measure the same construct. Both scales detected change in all domains over 2 years. The PUL 2.0 enhances the measurement qualities of the scale.

摘要

目的

报告上肢表现(PUL)版本 1.2 和 2.0 之间的差异,比较两个版本的测量能力,并比较它们在杜氏肌营养不良症中的纵向表现。

方法

对来自三个中心的双数据进行 Rasch 分析,以确认两个量表是否测量相同的结构。比较两个版本在不同领域的自然史变化分数。

结果

Rasch 分析表明,两个版本都测量相同的结构,PUL 2.0 更符合运动表现的结构,并且比 PUL 1.2 更能在所有能力水平上检测到 12 个月时的变化。这在 2 年的回顾中也是如此。

解释

我们的结果证实,PUL 1.2 和 2.0 版本在 2 年内检测到所有领域的变化。它们还表明,简化原始 PUL 1.2 的评分以获得修订后的 PUL 2.0 保持了结构的有效性,并增强了量表的测量质量。

本文添加内容

原始和修订的上肢表现(PUL)量表测量相同的结构。两个量表都在 2 年内检测到所有领域的变化。PUL 2.0 增强了量表的测量质量。

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