D'hooghe Marie Beatrice, Feys Peter, Deltour Sam, Van de Putte Isabelle, De Meue Jan, Kos Daphne, O Eijnde Bert, Van Asch Paul
Department of Neurology, National MS Center, Vanheylenstraat 16, 1820 Melsbroek, Belgium ; Faculty of Medicine and Pharmacy, Vrije Universiteit Brussel, Pleinlaan 2, 1050 Brussel, Belgium.
Rehabilitation Research Center (REVAL), Biomedical Research Institute, Faculty of Medicine and Life Sciences, Hasselt University, Agoralaan Building A, 3590 Diepenbeek, Belgium.
Mult Scler Int. 2014;2014:761210. doi: 10.1155/2014/761210. Epub 2014 May 21.
Persons with multiple sclerosis (MS) are less physically active than nondiseased persons and often report low self-efficacy levels. In the context of an awareness project to promote physical activity and participation in MS, we addressed the impact of training for and participation in a unique expedition. Medical events, relapses, and self-reported neurological worsening were followed from 6 months before and up to 4 months afterwards. Validated patient-reported outcome measures were used to assess fatigue, self-efficacy in exercising, walking abilities, and illness perception. Nine participants completed the training, expedition, and observational study. Minor events, relapses, and/or neurological worsening were reported in six participants. The three participants with mild disability and no cardiovascular risk factors or comorbidities were free of medical and neurological events. We found a significant reduction of motor fatigue at last when compared with the first assessment. The reduction tended to be more evident in participants with mild disability (Expanded Disability Status Scale (EDSS) <4 at baseline). Cognitive fatigue, self-efficacy, and self-reported walking abilities did not change significantly. Illness perceptions tended to be reduced over time in the domains of consequences, identity, and concerns. Overall, no major adverse events occurred.
患有多发性硬化症（MS）的人比未患病的人身体活动更少，且常报告自我效能水平较低。在一项促进MS患者身体活动和参与度的宣传项目背景下，我们探讨了参与一次独特探险活动的培训及参与情况所产生的影响。对从活动前6个月直至活动后4个月的医疗事件、病情复发及自我报告的神经功能恶化情况进行了跟踪。使用经过验证的患者报告结局指标来评估疲劳、运动自我效能、行走能力和疾病认知。九名参与者完成了培训、探险及观察性研究。六名参与者报告了轻微事件、病情复发和/或神经功能恶化。三名轻度残疾且无心血管危险因素或合并症的参与者未出现医疗和神经方面的事件。与首次评估相比，我们最终发现运动疲劳有显著减轻。这种减轻在基线时残疾程度较轻（扩展残疾状态量表（EDSS）<4）的参与者中往往更为明显。认知疲劳、自我效能和自我报告的行走能力没有显著变化。随着时间推移，在后果、身份认同和担忧等方面，疾病认知往往有所降低。总体而言，未发生重大不良事件。
