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多发性硬化症患者参与设计了一种用于测量身体机能及其对日常生活影响的工具:通俗易懂的概述。

People with multiple sclerosis help design a tool to measure physical functioning and how it affects their daily lives: a plain language summary.

机构信息

Global Evidence & Value Development - R&D, Merck Healthcare KGaA, Darmstadt, Germany.

Department of Rehabilitation Medicine, University of Washington, Seattle, WA, USA.

出版信息

Neurodegener Dis Manag. 2024;14(5):119-125. doi: 10.1080/17582024.2024.2357002. Epub 2024 Jul 26.

Abstract

WHAT IS THIS SUMMARY ABOUT?: This summary describes how researchers worked with people with multiple sclerosis (MS), neurologists and measurement experts to create an easy-to-use questionnaire to measure the physical function of people with MS. This questionnaire covers topics that are relevant and important to people with MS and their doctors.The ability to do what you want to do, when you want to do it, is one of the most important concerns for people with MS. This questionnaire could help doctors to record and manage how much MS affects people's lives.MS can bring a range of challenging symptoms such as '', tiredness, and problems with movement and balance. Many of these symptoms can make day-to-day activities, like working, very difficult for people with MS. Doctors currently use examinations like the and the , but these do not fully consider what is important to people living with MS. A questionnaire that specifically measures of people with MS could help doctors and people with MS to better understand, communicate and manage the physical effects of MS. In this study, people with MS were asked to help create a questionnaire about physical function that reflects topics that are important to them.

WHAT WERE THE RESULTS?: The PROMISnq physical function - Multiple Sclerosis 15a (the PROMIS PF MS questionnaire) was successfully created with the help of people with MS. People with MS thought that the PROMIS PF MS questionnaire covered issues important to their physical function. Scores were in line with results of other physical symptom measurement scales like the EDSS.

WHAT DO THE RESULTS MEAN?: The PROMIS PF MS questionnaire could be used to meaningfully record physical function among people with MS.

摘要

这段文本讲了什么?:这段摘要描述了研究人员如何与多发性硬化症(MS)患者、神经科医生和测量专家合作,创建一个易于使用的问卷来衡量 MS 患者的身体功能。该问卷涵盖了对 MS 患者及其医生相关且重要的主题。能够随心所欲地做自己想做的事情,是 MS 患者最关心的问题之一。这个问卷可以帮助医生记录和管理 MS 对人们生活的影响程度。MS 会带来一系列具有挑战性的症状,如疲劳、运动和平衡问题。这些症状中的许多症状会使 MS 患者的日常活动,如工作,变得非常困难。医生目前使用像 EDSS 这样的检查,但这些并不能完全考虑到与 MS 患者生活相关的重要内容。专门衡量 MS 患者身体功能的问卷可以帮助医生和 MS 患者更好地理解、沟通和管理 MS 的身体影响。在这项研究中,MS 患者被要求帮助创建一个反映他们关注的身体功能主题的问卷。

结果如何?:在 MS 患者的帮助下,成功创建了 PROMISnq 身体功能 - 多发性硬化症 15a(PROMIS PF MS 问卷)。MS 患者认为 PROMIS PF MS 问卷涵盖了对他们身体功能重要的问题。得分与 EDSS 等其他身体症状测量量表的结果一致。

这意味着什么?:PROMIS PF MS 问卷可用于有意义地记录 MS 患者的身体功能。

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