National MS Center, Neurology, Vanheylenstraat 16, Melsbroek and Vrije Universiteit Brussel (VUB), Center for Neurosciences, Laarbeeklaan 103, 1090 Brussel, Belgium.
Teva Pharma Belgium NV, Medical Department, Laarstraat 16, 2610 Wilrijk, Belgium.
Mult Scler Relat Disord. 2018 May;22:90-96. doi: 10.1016/j.msard.2018.03.020. Epub 2018 Mar 27.
Fatigue is a frequently occurring, often disabling symptom in MS with no single effective treatment. In current fatigue management interventions, personalized, real-time follow-up is often lacking. The objective of the study is to assess the feasibility of the MS TeleCoach, a novel intervention offering telemonitoring of fatigue and telecoaching of physical activity and energy management in persons with MS (pwMS) over a 12-week period. The goal of the MS TeleCoach, conceived as a combination of monitoring, self-management and motivational messages, is to enhance levels of physical activity thereby improving fatigue in pwMS in an accessible and interactive way, reinforcing self-management of patients.
We conducted a prospective, open-label feasibility study of the MS TeleCoach in pwMS with Expanded Disability Status Scale ≤ 4 and moderate to severe fatigue as measured by the Fatigue Scale for Motor and Cognitive Functions (FSMC). Following a 2-week run-in period to assess the baseline activity level per patient, the target number of activity counts was gradually increased over the 12-week period through telecoaching. The primary efficacy outcome was change in FSMC total score from baseline to study end. A subset of patients was asked to fill in D-QUEST 2.0, a usability questionnaire, to evaluate the satisfaction with the MS TeleCoach device and the experienced service.
Seventy-five patients were recruited from 16 centres in Belgium, of which 57 patients (76%) completed the study. FSMC total score (p = 0.009) and motor and cognitive subscores (p = 0.007 and p = 0.02 respectively) decreased from baseline to week 12, indicating an improvement in fatigue. One third of participants with severe fatigue changed to a lower FSMC category for both FSMC total score and subscores. The post-study evaluation of patient satisfaction showed that the intervention was well accepted and that patients were very satisfied with the quality of the professional services.
Using MS TeleCoach as a self-management tool in pwMS suffering from mild disability and moderate to severe fatigue appeared to be feasible, both technically and from a content perspective. Its use was associated with improved fatigue levels in the participants who completed the study. The MS Telecoach seems to meet the need for a low-cost, accessible and interactive self-management tool in MS.
疲劳是多发性硬化症（MS）中一种常见且经常致残的症状，目前尚无单一有效的治疗方法。在当前的疲劳管理干预中，往往缺乏个性化、实时的随访。本研究旨在评估 MS TeleCoach 的可行性，该新型干预措施为 MS 患者（pwMS）提供疲劳的远程监测和身体活动及能量管理的远程指导，为期 12 周。MS TeleCoach 的目标是通过远程监测、自我管理和激励信息的结合，提高身体活动水平，从而以一种可及和互动的方式改善 pwMS 的疲劳状况，加强患者的自我管理。
我们对 75 名扩展残疾状态量表（EDSS）评分≤4 和疲劳量表-运动和认知功能（FSMC）评估的中重度疲劳的 pwMS 患者进行了前瞻性、开放标签的 MS TeleCoach 可行性研究。在为期 2 周的适应期内，根据每位患者的基线活动水平评估目标活动计数，然后通过远程指导在 12 周内逐渐增加目标活动计数。主要疗效结局为从基线到研究结束时 FSMC 总分的变化。部分患者填写了 D-QUEST 2.0，这是一个可用性问卷，用于评估对 MS TeleCoach 设备和体验服务的满意度。
来自比利时 16 个中心的 75 名患者入组，其中 57 名（76%）患者完成了研究。从基线到第 12 周，FSMC 总分（p=0.009）和运动和认知子评分（p=0.007 和 p=0.02）均降低，表明疲劳有所改善。三分之一的重度疲劳患者在 FSMC 总分和子评分上都从较高类别变为较低类别。研究结束后的患者满意度评估显示，该干预措施得到了很好的接受，患者对专业服务的质量非常满意。
在轻度残疾和中重度疲劳的 pwMS 患者中使用 MS TeleCoach 作为自我管理工具，从技术和内容角度来看，似乎是可行的。完成研究的参与者的疲劳水平有所改善。MS Telecoach 似乎满足了 MS 患者对低成本、可及和互动的自我管理工具的需求。
