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疲劳对帕金森病患者意味着什么?一项定性研究。

What Fatigue Means to Persons Living with Parkinson's Disease? A Qualitative Study.

作者信息

George Derek D, Baer Nicholas K, Berliner Jean M, Jones Jacqueline, Kluger Benzi M

机构信息

Department of Neurology, School of Medicine University of Colorado-Anschutz Medical Campus Aurora Colorado USA.

Rehabilitation Sciences Program School of Medicine, University of Colorado-Anschutz Medical Campus Aurora Colorado USA.

出版信息

Mov Disord Clin Pract. 2021 Jul 7;8(6):919-924. doi: 10.1002/mdc3.13270. eCollection 2021 Aug.

DOI:10.1002/mdc3.13270
PMID:34405099
原文链接:https://pmc.ncbi.nlm.nih.gov/articles/PMC8354068/
Abstract

BACKGROUND

Fatigue is one of the most prevalent non-motor symptoms of Parkinson's disease (PD). Research is hampered by imprecise terminology and the lack of case definition criteria.

OBJECTIVES

To elicit the experiences of persons living with PD-related fatigue and provide ecological validation for case definition criteria.

METHODS

Qualitative interviews were conducted with 22 individuals and 4 focus groups, and analyzed using an inductive qualitative method.

RESULTS

Six core themes emerged: (i) difficulty initiating and completing important tasks; (ii) desire for others to understand their fatigue experience; (iii) heterogeneity of experiences and descriptions of fatigue; (iv) complex relationships with other non-motor symptoms; (v) variable self-management strategies; and (vi) general alignment with proposed case definition criteria.

CONCLUSIONS

PD-related fatigue impacts function, is subjectively distinguishable from other non-motor symptoms, has heterogeneous descriptions, and may be mitigated by various self-management strategies. Proposed case definition criteria appear ecologically valid and warrant further optimization and testing.

摘要

背景

疲劳是帕金森病(PD)最常见的非运动症状之一。研究因术语不精确和缺乏病例定义标准而受阻。

目的

了解帕金森病相关疲劳患者的经历,并为病例定义标准提供生态学验证。

方法

对22名个体和4个焦点小组进行了定性访谈,并采用归纳定性方法进行分析。

结果

出现了六个核心主题:(i)开始和完成重要任务困难;(ii)希望他人理解他们的疲劳经历;(iii)疲劳经历和描述的异质性;(iv)与其他非运动症状的复杂关系;(v)多样的自我管理策略;(vi)与提议的病例定义标准总体一致。

结论

帕金森病相关疲劳会影响功能,在主观上可与其他非运动症状区分开来,描述具有异质性,并且可以通过各种自我管理策略得到缓解。提议的病例定义标准在生态学上似乎是有效的,值得进一步优化和测试。

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本文引用的文献

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Psychometric Properties of the Apathy Scale in Advanced Parkinson's Disease.晚期帕金森病中淡漠量表的心理测量学特性
Parkinsons Dis. 2019 Mar 28;2019:1965394. doi: 10.1155/2019/1965394. eCollection 2019.
2
Patient perceptions of visual, vestibular, and oculomotor deficits in people with Parkinson's disease.帕金森病患者的视觉、前庭和眼动缺陷的患者感知。
Physiother Theory Pract. 2020 Jun;36(6):701-708. doi: 10.1080/09593985.2018.1492055. Epub 2018 Jul 6.
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Cognitive behavioral therapies and multiple sclerosis fatigue: A review of literature.认知行为疗法与多发性硬化症疲劳:文献综述
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Fatigue in Parkinson's disease: The contribution of cerebral metabolic changes.帕金森病中的疲劳:脑代谢变化的作用。
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Parkinson's disease-related fatigue: A case definition and recommendations for clinical research.帕金森病相关疲劳:病例定义及临床研究建议
Mov Disord. 2016 May;31(5):625-31. doi: 10.1002/mds.26511. Epub 2016 Feb 16.
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Exercise therapy for fatigue in multiple sclerosis.多发性硬化症疲劳的运动疗法
Cochrane Database Syst Rev. 2015 Sep 11;2015(9):CD009956. doi: 10.1002/14651858.CD009956.pub2.
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Independent effect of fatigue on health-related quality of life in patients with idiopathic Parkinson's disease.疲劳对特发性帕金森病患者健康相关生活质量的独立影响。
Neurol Sci. 2015 Dec;36(12):2221-6. doi: 10.1007/s10072-015-2340-9. Epub 2015 Jul 22.
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Tango for treatment of motor and non-motor manifestations in Parkinson's disease: a randomized control study.探戈治疗帕金森病运动和非运动症状:一项随机对照研究。
Complement Ther Med. 2015 Apr;23(2):175-84. doi: 10.1016/j.ctim.2015.01.015. Epub 2015 Feb 9.