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.
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.
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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