多发性硬化症患者自主在线疲劳干预系统Elevida英文版的可接受性和可行性

Q1 Nursing
International journal of MS care Pub Date : 2024-12-09 eCollection Date: 2024-10-01 DOI:10.7224/1537-2073.2023-048
Jo Lane, Carmel Poyser, Yixuan Zhao, Robyn M Lucas, Björn Meyer, Christoph Heesen, Nicolas Cherbuin, Anne Brüstle, Susy Macqueen, Alice Richardson, Christian Lueck, Stefan M Gold
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引用次数: 0

摘要

背景:疲劳在多发性硬化症(MS)中很常见;它严重影响生活质量,治疗选择有限。一项随机对照试验显示,一种自我指导的在线德国疲劳干预疗法Elevida有显著的疗效。我们在澳大利亚的多发性硬化症患者身上测试了英文版的Elevida。方法:参与者是自我报告至少有轻度疲劳(运动和认知功能疲劳量表≥43),有一定活动能力(扩展残疾状态量表< 8),无或轻度认知困难(多发性硬化症神经心理问卷≤32)的MS志愿者。参与者完成了为期9周的英语课程,并对其可接受性进行了评论和评级。在基线、项目结束和2个月后完成Chalder疲劳量表。我们进行了定性(专题分析)和定量(差异前后,使用配对t检验)分析。结果:38名MS患者表示对这项研究感兴趣;26例符合条件;20岁开始这项研究。15名参与者(75%)完成了该计划(平均[SD]: 58.9[10.5]岁,67%为女性,9名多发性硬化症复发,6名多发性硬化症进展)。超过90%的完成参与者将可接受性评为好或非常好,大约70%的人认为该计划有帮助。确定了三个主题:对节目功能的正面或负面评论,节目内容的错误假设,以及个人经历和反思。疲劳评分从基线到项目完成后2个月有显著改善(P < 0.01)。结论:依立达治疗多发性硬化症相关疲劳可接受且有效。确定的主题将指导程序的进一步发展,以满足用户的自主性、能力和相关性。
本文章由计算机程序翻译,如有差异,请以英文原文为准。
Acceptability and Feasibility of the English Version of Elevida, a Self-Guided Online Fatigue Intervention for People With Multiple Sclerosis.

Background: Fatigue is common in multiple sclerosis (MS); it significantly impairs quality of life, and treatment options are limited. A randomized controlled trial of Elevida, a self-guided, online German fatigue intervention, showed significant benefit. We tested an English version of Elevida with people with MS in Australia.

Methods: Participants were volunteers with MS who self-reported at least mild fatigue (≥ 43 on the Fatigue Scale for Motor and Cognitive Functions scale), some mobility (Expanded Disability Status Scale < 8), and no or mild cognitive difficulties (≤ 32 on the Multiple Sclerosis Neuropsychological Questionnaire). Participants completed the 9-week English Elevida program, commenting on and rating its acceptability. The Chalder Fatigue Scale was completed at baseline, end-of-program, and 2 months later. We undertook qualitative (thematic analysis) and quantitative (before/after differences, tested using paired t test) analyses.

Results: Thirty-eight people with MS expressed an interest in the study; 26 were eligible; 20 began the study. Fifteen participants (75%) completed the program (mean [SD]: 58.9 [10.5] years of age, 67% women, 9 with relapsing MS, 6 with progressive MS). Over 90% of completing participants rated acceptability as good or very good, and approximately 70% found the program helpful. Three themes were identified: Positive or negative comments on program features, incorrect assumptions in program content, and personal experiences and reflections. Significant improvement (P < .01) in fatigue scores from baseline to program completion was maintained 2 months after program completion.

Conclusions: Elevida was acceptable and effective for MS-related fatigue. Identified themes will guide further development of the program to satisfy users' sense of autonomy, competence, and relatedness.

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来源期刊
International journal of MS care
International journal of MS care Nursing-Advanced and Specialized Nursing
CiteScore
3.00
自引率
0.00%
发文量
40
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