Babbage Duncan R, van Kessel Kirsten, Drown Juliet, Thomas Sarah, Sezier Ann, Thomas Peter, Kersten Paula
Auckland University of Technology, Centre for eHealth, New Zealand.
Auckland University of Technology, Centre for Person Centred Research, New Zealand.
Internet Interv. 2019 Nov 9;18:100291. doi: 10.1016/j.invent.2019.100291. eCollection 2019 Dec.
Multiple sclerosis (MS) is a lifelong neurological condition affecting around 2.2 million people worldwide. There are a wide range of symptoms, with fatigue reported as one of the most troublesome. MS Energize-or MS Energise in UK English regions-is an iPhone app focused on self-management of fatigue for people with MS. Based on cognitive-behavioral therapy principles, the app covers MS fatigue, how to use energy effectively, how behavior, thoughts and emotions interact and impact on MS fatigue, as well as the potential effects of bodily and environmental factors. MS Energize provides education, interactive tasks, and supports application of the principles into a user's day-to-day life. We field tested the usability and perceived usefulness of MS Energize with 11 people with longstanding multiple sclerosis in New Zealand and the United Kingdom. Participants used the app over a period of five to six weeks after which they rated the usability of the app and participated in an in-depth qualitative interview. We developed four main themes through our thematic analysis. 1. Validation of participants' own experiences of living with MS fatigue. 2. The personal cost in engaging with such an intervention. 3. Reframing experiences and adding to knowledge. 4. That the app was generally a good idea. Field testers' feedback also identified usability issues that could be addressed. In particular, the amount of text-based content in the app contributed to the app itself being fatiguing. This field-testing process has highlighted the value of the app while also guiding our roadmap for further developments to enhance usability and usefulness. The next step is further refinement of components of MS Energize in preparation for a trial of its clinical and cost effectiveness.
多发性硬化症(MS)是一种影响全球约220万人的终身神经系统疾病。其症状多种多样,疲劳被认为是最棘手的症状之一。MS Energize(在英国英语地区为MS Energise)是一款针对多发性硬化症患者疲劳自我管理的iPhone应用程序。该应用基于认知行为疗法原则,涵盖MS疲劳、如何有效利用能量、行为、思想和情绪如何相互作用并影响MS疲劳,以及身体和环境因素的潜在影响。MS Energize提供教育、互动任务,并支持将这些原则应用到用户的日常生活中。我们在新西兰和英国对11名患有长期多发性硬化症的患者进行了MS Energize的可用性和感知有用性的实地测试。参与者使用该应用程序五到六周,之后他们对应用程序的可用性进行评分,并参与了深入的定性访谈。通过我们的主题分析,我们得出了四个主要主题。1. 参与者自身MS疲劳生活经历的验证。2. 参与这种干预的个人成本。3. 重新构建经历并增加知识。4. 该应用总体上是个好主意。实地测试者的反馈还指出了一些可以解决的可用性问题。特别是,应用程序中基于文本的内容量导致应用程序本身令人疲劳。这个实地测试过程突出了该应用的价值,同时也为我们进一步开发以提高可用性和有用性的路线图提供了指导。下一步是进一步完善MS Energize的各个组件,为其临床和成本效益试验做准备。