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多发性硬化症中对身体机能价值的认知。

Perceptions on the value of bodily functions in multiple sclerosis.

机构信息

Institut für Neuroimmunologie und Multiple Sklerose, Universitätsklinikum Hamburg-Eppendorf, Hamburg, Germany.

Klinik und Poliklinik für Neurologie, Universitätsklinikum Hamburg-Eppendorf, Hamburg, Germany.

出版信息

Acta Neurol Scand. 2018 Mar;137(3):356-362. doi: 10.1111/ane.12881. Epub 2017 Dec 3.

DOI:10.1111/ane.12881
PMID:29205262
Abstract

BACKGROUND

In neurological diseases presenting with a plethora of symptoms, the value of bodily functions for a given patient might be a guide for clinical management. Multiple sclerosis (MS) is paradigmatic in this respect, and little is known about the value of different bodily functions of patients and their physicians' perceptions.

METHODS

In a multicenter study, 171 patients with relapsing-remitting multiple sclerosis (RRMS), 61% with a clinically active disease within the last 2 years were followed over up to 3 years and yearly patients and their study physician rated on the perceived value of 13 bodily functions via a priority list. Differences between patients and physicians as well as modulating disease demographic factors were analyzed.

RESULTS

Patients with RRMS rated visual function followed by thinking and memory and walking highest while physicians stressed mobility, followed by thinking and memory and alertness most. Ratings were independent from disease duration or disability. Strongest value judgment differences were seen in swallowing regarded more relevant by patients and hand function regarded more relevant by physicians. In general, patients' and physicians' ratings through time were quite stable. Collapsing physical items into a physical functioning scale and mental items in a mental function scale, both dimensions were regarded equally important by patients while physicians underscored physical functioning (P = .016).

CONCLUSION

There are differences between patients and physicians in value statements of bodily functions in MS. In particular, visual functioning is under-recognized by physicians.

摘要

背景

在表现出多种症状的神经疾病中,特定患者的身体功能对临床管理具有重要价值。多发性硬化症(MS)在这方面具有代表性,但人们对患者不同身体功能的价值及其医生的看法知之甚少。

方法

在一项多中心研究中,171 名复发缓解型多发性硬化症(RRMS)患者(61%在过去 2 年内有临床活动疾病)接受了长达 3 年的随访,并每年通过优先级列表评估患者及其研究医生对 13 种身体功能的感知价值。分析了患者和医生之间的差异以及调节疾病人口统计学因素的影响。

结果

RRMS 患者将视觉功能、思维和记忆以及行走评为最高,而医生则强调了移动性、思维和记忆以及机敏性。这些评分与疾病持续时间或残疾无关。在吞咽功能方面,患者认为其更相关,而在手部功能方面,医生认为其更相关,这两个方面的价值判断差异最大。总体而言,患者和医生的评分随时间相对稳定。将身体项目合并为身体功能量表,将心理项目合并为心理功能量表,患者认为这两个维度同等重要,而医生则强调了身体功能(P=0.016)。

结论

在多发性硬化症患者和医生之间,对身体功能的价值陈述存在差异。特别是,医生对视觉功能的重视程度不足。

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