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纤维肌痛认知功能障碍的生活体验:患者如何讲述他们的经历以及对患者教育的建议

Lived Experiences of Cognitive Dysfunction in Fibromyalgia: How Patients Discuss Their Experiences and Suggestions for Patient Education.

作者信息

Millar Kayla A, Crump Lyndsay, LaChapelle Diane L

机构信息

Department of Psychology, University of New Brunswick, Fredericton, NB, Canada.

出版信息

J Patient Exp. 2024 Feb 6;11:23743735241229385. doi: 10.1177/23743735241229385. eCollection 2024.

Abstract

Cognitive dysfunction (CD) is a common, impairing symptom experienced by persons with fibromyalgia (FM). This study explored how individuals with FM describe their experience of CD in an online peer support environment. Posts referencing cognitive symptoms were extracted from two Facebook FM peer support groups at two timepoints. Using inductive Thematic Analysis, key discussion themes were identified and compared across groups and time. Four themes represented the way members described their cognitive experiences in FM: understanding and describing CD experiences, distrust of cognitive abilities, choosing between pain and medication side effects, and misunderstanding and judgement from others. Two themes represented the impact of CD on members' lives: impaired social interaction and loss of identity. Group members described broad impairments in daily functioning that significantly and negatively impacted their quality of life, indicating CD symptoms may play a more prominent role in the FM experience than previously understood. An infographic is included to aid patient education and help facilitate patient-provider discussions of CD symptoms.

摘要

认知功能障碍(CD)是纤维肌痛(FM)患者常见的一种损害性症状。本研究探讨了FM患者在在线同伴支持环境中如何描述他们的CD体验。在两个时间点从两个Facebook FM同伴支持小组中提取了提及认知症状的帖子。使用归纳主题分析法,确定关键讨论主题并在不同小组和时间之间进行比较。四个主题代表了成员描述他们在FM中的认知体验的方式:理解和描述CD体验、对认知能力的不信任、在疼痛和药物副作用之间进行选择,以及来自他人的误解和评判。两个主题代表了CD对成员生活的影响:社交互动受损和身份丧失。小组成员描述了日常功能方面的广泛损害,这些损害对他们的生活质量产生了显著的负面影响,表明CD症状在FM体验中可能比以前所理解的发挥更突出的作用。文中包含一个信息图表,以帮助患者教育,并促进患者与提供者之间关于CD症状的讨论。

https://cdn.ncbi.nlm.nih.gov/pmc/blobs/ae58/10851761/761cab011ca1/10.1177_23743735241229385-fig1.jpg

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