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多发性硬化症患者对常规认知测试的态度。

Patient Attitudes to Routine Cognitive Testing in Multiple Sclerosis.

作者信息

Mortensen Gitte Lee, Theódórsdóttir Ásta, Sejbæk Tobias, Illes Zsolt

机构信息

AnthroConsult, Århus C 8000, Denmark.

Department of Neurology, Odense University Hospital, Odense, Denmark.

出版信息

Patient Prefer Adherence. 2020 Apr 2;14:693-704. doi: 10.2147/PPA.S245623. eCollection 2020.

Abstract

BACKGROUND AND AIM

In recent years, cognitive dysfunction (CD) in multiple sclerosis (MS) has received increased attention. Neuropsychological tests have been developed allowing to monitor changes in patients' cognitive functions. Knowledge is lacking, however, about patients' attitudes towards introducing routine cognitive testing. It was the aim of this qualitative study to explore this.

MATERIALS AND METHODS

Based on a literature study, semi-structured interview guides were designed and used in qualitative interviews with 12 Danish patients. Participants were selected to represent different perspectives on CD and included patients with relapsing-remitting MS (RRMS) and secondary-progressive MS (SPMS), women and men with varying time since diagnosis and cognitive test scores using the Symbol Digit Modalities Test (SDMT). The data were analysed using a constructivist approach in order to identify significant relations between the quality of life (QoL) impact of CD, and attitudes towards routine cognitive testing.

RESULTS

Most participants reported several subtypes of CD, yet objective CD did not coincide with subjective CD nor did it translate directly into poorer QoL. Overall, CD appeared to have larger impact on the QoL of patients with RRMS and higher SDMT scores, compared to patients with SPMS and lower SDMT scores. The QoL impact of CD manifested itself in the encounter between individual symptoms, expectations, coping and meaningful activities. All patients supported an introduction of routine cognitive testing, but patients with RRMS and SPMS had different main reasons to do so. These were related to supporting research, optimising treatment decisions, and providing documentation of this invisible MS symptom.

CONCLUSION

All aspects of MS patients' QoL may be affected by CD. Introducing routine cognitive testing was widely supported by patients in all phases of MS calling for comprehensive care taking both physical and cognitive difficulties into account.

摘要

背景与目的

近年来,多发性硬化症(MS)中的认知功能障碍(CD)受到了越来越多的关注。已经开发出神经心理学测试,用于监测患者认知功能的变化。然而,对于患者对引入常规认知测试的态度,我们了解不足。本定性研究的目的就是探索这一点。

材料与方法

基于文献研究,设计了半结构化访谈指南,并用于对12名丹麦患者进行的定性访谈。选择参与者以代表对CD的不同观点,包括复发缓解型MS(RRMS)和继发进展型MS(SPMS)患者、诊断后不同时间以及使用符号数字模态测试(SDMT)得出不同认知测试分数的男性和女性。采用建构主义方法分析数据,以确定CD对生活质量(QoL)的影响与对常规认知测试的态度之间的显著关系。

结果

大多数参与者报告了几种CD亚型,但客观CD与主观CD并不一致,也没有直接转化为较差的QoL。总体而言,与SPMS患者和较低SDMT分数的患者相比,CD似乎对RRMS患者和较高SDMT分数的患者的QoL影响更大。CD对QoL的影响体现在个体症状、期望、应对方式和有意义活动之间的相互作用中。所有患者都支持引入常规认知测试,但RRMS患者和SPMS患者这样做的主要原因不同。这些原因与支持研究、优化治疗决策以及记录这种无形的MS症状有关。

结论

MS患者QoL的各个方面都可能受到CD的影响。在MS的各个阶段,患者广泛支持引入常规认知测试,这就要求提供综合护理,同时考虑身体和认知方面的困难。

https://cdn.ncbi.nlm.nih.gov/pmc/blobs/7159/7135142/09ad322c446d/PPA-14-693-g0001.jpg

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