Kratz Anna L, Alschuler Kevin N, Williams David A, Ehde Dawn M
Department of Physical Medicine and Rehabilitation, University of Michigan.
Department of Rehabilitation Medicine, University of Washington.
Rehabil Psychol. 2021 May;66(2):224-232. doi: 10.1037/rep0000375. Epub 2021 Feb 4.
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. The first study phase involved the development of a web-based symptom self-management program. The second phase involved a single-arm pilot trial ( = 20) of unguided website use for 12 weeks in adults with MS and elevated levels of chronic pain, fatigue, and/or depressed mood. 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. 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).
我们描述了与多发性硬化症（MS）患者合作开发一个基于网络的多症状自我管理项目的过程，该项目旨在解决慢性疼痛、疲劳和/或抑郁症状。本文展示了一项试点试验的结果，以测试该项目的可行性和效果。第一个研究阶段涉及开发一个基于网络的症状自我管理项目。第二阶段涉及一项单臂试点试验（n = 20），让患有MS且慢性疼痛、疲劳和/或情绪低落水平较高的成年人在无指导的情况下使用该网站12周。一个基于网络的症状自我管理项目“我的MS工具包”于2019年开发并公开发布以供使用。试点试验的结果表明，参与者平均访问该网站5.4次，每次访问在该网站上花费约7分钟。80%的人将干预相关的活动限制、症状、情绪和整体生活质量的变化评为“有所”或“中度”改善。尽管在结果测量上没有显著改善，但在那些对感兴趣的结果筛查呈阳性的人（即显示该症状的临床升高水平）中，疲劳方面有37.5%、疼痛方面有45.5%、抑郁症状方面有40%出现了临床上显著的改善。“我的MS工具包”是一个可访问的、由利益相关者提供信息的基于网络的MS症状自我管理项目，在一部分参与者中对症状产生了临床上显著的积极影响。需要更多的研究来进一步检验该项目的效果，并阐明谁最有可能从这种自我指导干预中受益。（PsycInfo数据库记录（c）2021美国心理学会，保留所有权利）
