BACKGROUND Fatigue in Parkinson's disease (PD) is multifaceted and associated with reduced quality of life. In turn, the language used by people with PD to describe fatigue is variable and poorly understood. We sought to elucidate the lexicon of fatigue using a qualitative grounded theory approach. OBJECTIVE The objective of this study was to understand how patients with PD describe fatigue. METHODS A pre-study phase of online journaling (Phase 1) provided information regarding topics of importance to patients. Following this, two independent samples of fatigued subjects were studied. Individuals with PD participated in a telephone interview (Phase 2); interview transcripts were analyzed to develop a detailed codebook. To ensure trustworthiness of the findings, an online survey (Phase 3) was administered to individuals with self-reported PD participating in the online study Fox Insight. The survey included the following question: "How do you define fatigue? Please provide your definition in the space below." The codebook developed from Phase 2 was applied to the Phase 3 responses. RESULTS Fifteen individuals participated in Phase 2 and 413 individuals completed Phase 3. Fatigue was subdivided into three domains: cognitive, emotional, and physical. Nearly all individuals experienced more than one domain of fatigue. The most common themes included tiredness, lack of energy, and negative motivation. CONCLUSION Fatigue in PD is multidimensional. Questionnaires that only assess the physical impact of fatigue may not be adequate to capture the broad range of experiences of fatigue among people with PD.

中文翻译：

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了解帕金森病疲劳词汇。

背景帕金森病(PD) 中的疲劳是多方面的，并且与生活质量降低有关。反过来，PD 患者用来描述疲劳的语言是多变的，而且理解得很少。我们试图使用定性的扎根理论方法来阐明疲劳的词汇。目的 本研究的目的是了解 PD 患者如何描述疲劳。方法 在线日记的预研究阶段（第 1 阶段）提供有关对患者重要的主题的信息。在此之后，研究了疲劳受试者的两个独立样本。患有 PD 的个人参加了电话采访（第 2 阶段）；对访谈记录进行分析以制定详细的密码本。为确保调查结果的可信度，对参与在线研究 Fox Insight 的自我报告 PD 的个人进行了在线调查（第 3 阶段）。调查包括以下问题：“您如何定义疲劳？请在下方空白处提供您的定义。” 从第 2 阶段开发的码本应用于第 3 阶段响应。结果 15 个人参加了第 2 阶段，413 个人完成了第 3 阶段。疲劳被细分为三个领域：认知、情绪和身体。几乎所有的人都经历过不止一个领域的疲劳。最常见的主题包括疲倦、缺乏活力和消极动力。结论 PD 中的疲劳是多维的。