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Feasibility and effectiveness of a novel dynamic arm support in persons with spinal muscular atrophy and duchenne muscular dystrophy
Journal of NeuroEngineering and Rehabilitation ( IF 5.1 ) Pub Date : 2021-05-21 , DOI: 10.1186/s12984-021-00868-6
Mariska M H P Janssen 1 , Jolinda Horstik 2 , Paulien Klap 2 , Imelda J M de Groot 1
Affiliation  

Neuromuscular disorders (NMD) commonly affect the upper extremity. Due to muscle weakness, performance of daily activities becomes increasingly difficult, which leads to reduced independence and quality of life. In order to support the performance of upper extremity tasks, dynamic arm supports may be used. The Yumen Arm is a novel dynamic arm support specially developed for people with NMD. The aim of this study is to evaluate the feasibility and effectiveness of the Yumen Arm in persons with Duchenne Muscular Dystrophy (DMD) and persons with Spinal Muscular Atrophy (SMA). Three persons with DMD and three persons with SMA participated in this study. All participants conducted a set of measures with and without the Yumen Arm. Outcome measures were: active range of motion of the arm and trunk (i.e. Reachable Workspace, Functional Workspace, and trunk movement), fatigue (OMNI-RPE), Performance of Upper Limb (PUL) scale and some additional activities of daily living. User experiences were collected using a questionnaire. The Yumen Arm could be used by all participants. Results showed a median increase in active range of motion (4% relative surface area), and a median increase of function ability (> 11% PUL score) when using the Yumen Arm. In addition, three out of four (data from 2 participants was missing) participants indicated that activity performance was less fatiguing when using the Yumen Arm. Four out of five (data from 1 participant was missing) participants indicated that they would like to use the Yumen Arm in their daily lives. This study is one of the first studies describing a range of objective measures to examine the effectiveness of a dynamic arm support. Based on these measurements we can conclude that the Yumen Arm effectively improves arm function in NMD patients, however the effectiveness varies a lot between individual subjects. We provided detailed recommendations for the improvement of the Yumen Arm, and possible also for the development of other dynamic arm supports. This study showed a lot of variability between individual subjects, which emphasizes the importance of tuning dynamic arm supports based on individual user characteristics, such as scoliosis, functional capacity and muscle strength.

中文翻译:

新型动态手臂支撑在脊髓性肌萎缩和杜氏肌营养不良症患者中的可行性和有效性

神经肌肉疾病(NMD)通常会影响上肢。由于肌肉无力,日常活动变得越来越困难,这导致独立性和生活质量下降。为了支持上肢任务的执行,可以使用动态手臂支撑。Yumen Arm是专门为NMD患者开发的新型动态手臂支撑。这项研究的目的是评估玉门臂在杜兴氏肌营养不良症(DMD)和脊柱肌肉萎缩症(SMA)患者中的可行性和有效性。三名DMD患者和三名SMA患者参加了这项研究。所有参与者在有或没有玉门臂的情况下都采取了一系列措施。结果指标为:手臂和躯干的活动范围(即可到达工作区,功能性工作区,和躯干运动),疲劳(OMNI-RPE),上肢表现(PUL)量表以及一些其他日常活动。使用问卷调查收集用户体验。所有参与者都可以使用玉门臂。结果显示,使用Yumen Arm时,活动活动范围的中位数增加(4%相对表面积),而功能能力的中位数增加(> 11%PUL分数)。此外,四分之三(缺少2名参与者的数据)的参与者表示,在使用Yumen Arm时,运动表现的疲劳程度较低。五分之四(缺少1名参与者的数据)的参与者表示,他们希望在日常生活中使用Yumen Arm。这项研究是最早描述一项旨在研究动态手臂支撑有效性的客观措施的研究之一。基于这些测量,我们可以得出结论,玉门臂可以有效地改善NMD患者的臂功能,但是各个受试者之间的效果差异很大。我们提供了有关改善玉门臂的详细建议,也可能为开发其他动态臂支撑提供了建议。这项研究表明,各个受试者之间存在很大的变异性,这强调了根据个人用户特征(如脊柱侧弯,功能能力和肌肉力量)调整动态手臂支撑的重要性。也可能用于开发其他动态手臂支架。这项研究表明,各个受试者之间存在很大的变异性,这强调了根据个人用户特征(如脊柱侧弯,功能能力和肌肉力量)调整动态手臂支撑的重要性。也可能用于开发其他动态手臂支架。这项研究表明,各个受试者之间存在很大的变异性,这强调了根据个人用户特征(如脊柱侧弯,功能能力和肌肉力量)调整动态手臂支撑的重要性。
更新日期:2021-05-22
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