多发性硬化症患者帮助设计了一种测量身体功能的工具,以及该工具如何影响他们的日常生活:通俗易懂的摘要。

IF 2.3 Q3 CLINICAL NEUROLOGY Neurodegenerative disease management Pub Date : 2024-01-01 Epub Date: 2024-07-26 DOI:10.1080/17582024.2024.2357002
Paul Kamudoni, Dagmar Amtmann, Jeffrey Johns, Karon F Cook, Rana Salem, Sam Salek, Jana Raab, Rod Middleton, Pavle Repovic, Kevin N Alschuler, Gloria von Geldern, Annette Wundes, Amy Barrett, Oyebimpe Olayinka-Amao, Christian Henke
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引用次数: 0

摘要

本摘要介绍了研究人员如何与多发性硬化症(MS)患者、神经病学家和测量专家合作,制作出一份易于使用的问卷来测量多发性硬化症患者的身体功能。该问卷涵盖了与多发性硬化症患者及其医生息息相关的重要主题。这份问卷可以帮助医生记录和管理多发性硬化症对患者生活的影响程度。多发性硬化症会带来一系列具有挑战性的症状,如 "脑雾"、疲倦、运动和平衡问题。多发性硬化症会带来一系列具有挑战性的症状,如 "脑雾"、疲倦、运动和平衡问题等,其中许多症状会使多发性硬化症患者的日常活动(如工作)变得非常困难。医生目前使用的检查方法包括扩展残疾状况量表(EDSS)和多发性硬化症功能综合量表(MSFC),但这些方法并没有充分考虑到对多发性硬化症患者的重要性。一份专门测量多发性硬化症患者身体功能的问卷可以帮助医生和多发性硬化症患者更好地了解、沟通和管理多发性硬化症对身体的影响。在这项研究中,多发性硬化症患者被要求帮助制作一份有关身体功能的问卷,以反映对他们来说重要的话题:在多发性硬化症患者的帮助下,PROMIS®nq 体力功能--多发性硬化症 15a(PROMIS® PF 多发性硬化症问卷)被成功制作出来。多发性硬化症患者认为PROMIS® PF多发性硬化症问卷涵盖了对其身体功能非常重要的问题。结果说明了什么? PROMIS® PF MS 问卷可用于有意义地记录多发性硬化症患者的身体功能。
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People with multiple sclerosis help design a tool to measure physical functioning and how it affects their daily lives: a plain language summary.

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 'brain fog', 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 Expanded Disability Status Scale (EDSS) and the MS Functional Composite (MSFC), but these do not fully consider what is important to people living with MS. A questionnaire that specifically measures physical functioning 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 PROMIS®nq 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.

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