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Development and pilot testing of a web-based symptom management program for multiple sclerosis: My MS toolkit.
Rehabilitation Psychology ( IF 3.713 ) Pub Date : 2021-02-04 , DOI: 10.1037/rep0000375
Anna L Kratz 1 , Kevin N Alschuler 2 , David A Williams 3 , Dawn M Ehde 2
Affiliation  

Objective: We describe the process of working with stakeholders with multiple sclerosis (MS) to develop a web-based multisymptom self-management program to address chronic pain, fatigue, and/or depressive symptoms. The results of a pilot trial to test the feasibility and effects of the program are presented. Method: The first study phase involved the development of a web-based symptom self-management program. The second phase involved a single-arm pilot trial (N = 20) of unguided website use for 12 weeks in adults with MS and elevated levels of chronic pain, fatigue, and/or depressed mood. Results: A web-based symptom self-management program, My MS Toolkit, was developed and released for public use in 2019. The results from the pilot trial showed that on average, participants accessed the website 5.4 times, spending about 7 min on the site per visit. Eighty percent rated intervention-related changes in activity limitations, symptoms, emotions, and overall quality of life as either "somewhat" or "moderately" better. Although there were no significant improvements on outcome measures, of those who screened positive for the outcome of interest (i.e., showed a clinically elevated level of that symptom), clinically significant improvement was seen in 37.5% for fatigue, 45.5% for pain, and 40% for depressive symptoms. Conclusions: My MS Toolkit is an accessible, stakeholder-informed, web-based MS symptom self-management program that demonstrated a clinically significant positive impact on symptoms in a proportion of participants. More research is needed to further examine the effects of this program and elucidate who is most likely to benefit from this type of self-guided intervention. (PsycInfo Database Record (c) 2021 APA, all rights reserved).

中文翻译:

多发性硬化症基于网络的症状管理程序的开发和试点测试:我的 MS 工具包。

目标:我们描述了与多发性硬化症 (MS) 利益相关者合作开发基于网络的多症状自我管理计划以解决慢性疼痛、疲劳和/或抑郁症状的过程。介绍了测试该计划的可行性和效果的试点试验结果。方法:第一个研究阶段涉及开发基于网络的症状自我管理计划。第二阶段涉及一项单臂试点试验(N = 20),在患有 MS 且慢性疼痛、疲劳和/或情绪低落的成年人中进行为期 12 周的无指导网站使用。结果:基于网络的症状自我管理程序 My MS Toolkit 于 2019 年开发并发布供公众使用。试点试验的结果表明,参与者平均访问该网站 5.4 次,每次访问在网站上花费大约 7 分钟。80% 的人将活动限制、症状、情绪和整体生活质量方面的干预相关变化评为“有点”或“中等”更好。尽管在结果测量方面没有显着改善,但在那些对感兴趣的结果筛查呈阳性(即显示该症状的临床水平升高)的人中,37.5% 的疲劳、45.5% 的疼痛和40% 为抑郁症状。结论:我的 MS 工具包是一个可访问的、利益相关者知情的、基于网络的 MS 症状自我管理计划,它在一定比例的参与者中表现出对症状的临床显着积极影响。需要更多的研究来进一步检验该计划的效果,并阐明谁最有可能从这种自我引导的干预中受益。(PsycInfo 数据库记录 (c) 2021 APA,保留所有权利)。
更新日期:2021-02-04
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