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根据临床表型和修订版肌萎缩侧索硬化功能评定量表,运动神经元病患者辅助技术使用情况的差异:一项前瞻性观察研究。

Variation in assistive technology use in Motor Neuron Disease according to clinical phenotypes and ALS Functional Rating Scale - Revised Score: A prospective observational study.

作者信息

Connors Karol, Mahony Lisa, Morgan Prue

机构信息

Calvary Health Care Bethlehem, Melbourne, Australia.

Physiotherapy Department, Monash University, Melbourne, Australia.

出版信息

NeuroRehabilitation. 2019;44(2):303-313. doi: 10.3233/NRE-182511.

DOI:10.3233/NRE-182511
PMID:31006691
Abstract

BACKGROUND

Assistive devices enhance independence and quality of life for people living with motor neuron disease (MND), but prescription can be challenging.

OBJECTIVE

Improved prescription of assistive devices, through improved understanding of the relationship between clinical phenotypes, Amyotrophic Lateral Sclerosis Functional Rating Scale - Revised (ALSFRS-R) functional domain sub-scores and assistive technology required by people living with MND.

METHODS

Prospective, observational consecutive-sample study of 269 patients with MND diagnosis.

MAIN OUTCOME MEASURES

MND phenotype, ALSFRS-R scores and assistive technology devices in use.

RESULTS

A statistically significant difference in total concurrent assistive technology item use was found between phenotypes (p = 0.001), with those with ALS Bulbar onset using the least. There was also a statistically significant difference in assistive technology usage in five of seven assistive technology categories across the clinical phenotypes, namely orthoses (p < 0.000), mobility devices (p < 0.000), transfer devices (p < 0.000), communication devices (p < 0.000), and activities of daily living devices (p = 0.016). Correlations between ALSFRS-R sub-score items and assistive technology count confirmed the utility of this outcome measure for equipment prescription.

CONCLUSIONS

Clinicians need to consider MND phenotype and/or ALSFRS-R domain sub-score in clinical decision-making regarding assistive technology, as this will determine the pattern of disease and its progression, and hence assistive technology required.

摘要

背景

辅助设备可提高运动神经元病(MND)患者的独立性和生活质量,但开具处方可能具有挑战性。

目的

通过更好地理解临床表型、肌萎缩侧索硬化功能评定量表修订版(ALSFRS-R)功能领域子评分与MND患者所需辅助技术之间的关系,改善辅助设备的处方开具。

方法

对269例确诊为MND的患者进行前瞻性、观察性连续样本研究。

主要观察指标

MND表型、ALSFRS-R评分及使用的辅助技术设备。

结果

不同表型之间在同时使用的辅助技术项目总数上存在统计学显著差异(p = 0.001),其中延髓起病型ALS患者使用最少。在七种辅助技术类别中的五种,不同临床表型之间在辅助技术使用方面也存在统计学显著差异,即矫形器(p < 0.000)、移动设备(p < 0.000)、转移设备(p < 0.000)、通讯设备(p < 0.000)和日常生活设备(p = 0.016)。ALSFRS-R子评分项目与辅助技术数量之间的相关性证实了该观察指标在设备处方中的实用性。

结论

临床医生在辅助技术的临床决策中需要考虑MND表型和/或ALSFRS-R领域子评分,因为这将决定疾病模式及其进展,进而决定所需的辅助技术。

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