Akbar Nadine, Turpin Karen, Petrin Julie, Smyth Penny, Finlayson Marcia
School of Rehabilitation Therapy, Faculty of Health Sciences, Queen's University, Kingston, Ontario.
Department of Public Health Sciences, School of Public Health.
Int J Rehabil Res. 2018 Jun;41(2):114-121. doi: 10.1097/MRR.0000000000000271.
Fatigue management interventions for individuals with multiple sclerosis (MS) often feature structured programmes requiring repeated, in-person attendance that is not possible for all individuals. We sought to determine whether MS INFoRm, a self-directed fatigue management resource for individuals with MS, was worth further, more rigorous evaluation. Our indicators of worthiness were actual use of the resource by participants over 3 months, reductions in fatigue impact and increases in self-efficacy, and participant reports of changes in fatigue management knowledge and behaviours. This was a single-group, mixed-methods, before-after pilot study in individuals with MS reporting mild to moderate fatigue. Thirty-five participants were provided with MS INFoRm by a USB flash drive to use at home for 3 months, on their own volition. Twenty-three participants completed all standardized questionnaires, semi-structured interviews and study process measures. Participants reported actively using MS INFoRm over the 3-month study period (median total time spent using MS INFoRm=315 min) as well as significantly lower overall fatigue impact (Modified Fatigue Impact Scale: t=2.6, P=0.01), increased knowledge of MS fatigue (z=-2.8, P=0.01) and greater confidence in managing MS fatigue (z=-3.3, P=0.001). Individuals with significant reductions in fatigue impact also reported behavioural changes including tracking fatigue, better communication with others, greater awareness, improved quality of life and being more proactive. This study provides evidence that further rigorous evaluation of MS INFoRm, a self-directed resource for managing fatigue, is worth pursuing.
针对多发性硬化症（MS）患者的疲劳管理干预措施通常采用结构化方案，要求患者反复亲自到场，而这并非所有患者都能做到。我们试图确定MS INFoRm（一种针对MS患者的自主疲劳管理资源）是否值得进行进一步、更严格的评估。我们评估其价值的指标包括参与者在3个月内对该资源的实际使用情况、疲劳影响的减轻程度、自我效能感的提高，以及参与者关于疲劳管理知识和行为变化的报告。这是一项单组、混合方法、前后对照的试点研究，研究对象为报告有轻度至中度疲劳的MS患者。35名参与者通过USB闪存驱动器获得了MS INFoRm，以便他们自愿在家中使用3个月。23名参与者完成了所有标准化问卷、半结构化访谈和研究过程测量。参与者报告在3个月的研究期间积极使用MS INFoRm（使用MS INFoRm的总时间中位数=315分钟），同时总体疲劳影响显著降低（改良疲劳影响量表：t=2.6，P=0.01），对MS疲劳的了解增加（z=-2.8，P=0.01），以及对管理MS疲劳更有信心（z=-3.3，P=0.001）。疲劳影响显著降低的个体还报告了行为变化，包括跟踪疲劳、更好地与他人沟通、提高意识、改善生活质量以及更加积极主动。这项研究提供了证据，表明对MS INFoRm（一种自主管理疲劳的资源）进行进一步严格评估是值得的。
