Metzler-Baddeley Claudia, Busse Monica, Drew Cheney, Pallmann Philip, Cantera Jaime, Ioakeimidis Vasileios, Rosser Anne
Cardiff University Brain Research Imaging Centre (CUBRIC), School of Psychology, Cardiff University, Cardiff, United Kingdom.
Centre for Trials Research, School of Medicine, Cardiff University, Cardiff, United Kingdom.
JMIR Form Res. 2023 Oct 6;7:e48395. doi: 10.2196/48395.
Huntington disease (HD) is a neurodegenerative condition that leads to progressive loss of cognitive-executive and motor functions, largely due to basal ganglia (BG) atrophy. Currently, there are no therapeutic interventions tailored to address executive and motor dysfunction in people with HD. Music-based interventions may aid executive abilities by compensating for impaired BG-reliant timing and rhythm generation using external rhythmic beats. Here, we applied an integrated knowledge translation (IKT) framework to co-design a tablet-based rhythmic drumming training app (HD-DRUM) to stimulate executive and motor abilities in people with HD.
The primary aim was to develop the HD-DRUM app for at-home use that addressed the accessibility needs of people with HD and allowed for the quantification of performance improvements and adherence for controlled clinical evaluation.
The IKT framework was applied to iteratively refine the design of HD-DRUM. This process involved 3 phases of knowledge user engagement and co-design: a web-based survey of people with HD (n=29) to inform about their accessibility needs, usability testing of tablet-based touch screens as hardware solutions, and usability testing of the design and build of HD-DRUM to meet the identified accessibility needs of people affected by HD and their clinicians (n=12).
The survey identified accessibility problems due to cognitive and motor control impairments such as difficulties in finding and navigating through information and using PC keyboards and mouses to interact with apps. Tablet-based touch screens were identified as feasible and accessible solutions for app delivery. Key elements to ensure that the app design and build met the needs of people with HD were identified and implemented. These included the facilitation of intuitive navigation through the app using large and visually distinctive buttons; the use of audio and visual cues as training guides; and gamification, positive feedback, and drumming to background music as a means to increase motivation and engagement. The co-design development process resulted in the proof-of-concept HD-DRUM app that is described here according to the Template for Intervention Description and Replication checklist. HD-DRUM can be used at home, allowing the quantification of performance improvements and adherence for clinical evaluation, matching of training difficulty to users' performance levels using gamification, and future scale-up to reach a wide range of interested users.
Applying an IKT-based co-design framework involving knowledge user engagement allowed for the iterative refinement of the design and build of the tablet-based HD-DRUM app intervention, with the aim of stimulating BG-reliant cognitive and motor functions. Mapping the intervention against the Template for Intervention Description and Replication framework to describe complex interventions allowed for the detailed description of the HD-DRUM intervention and identification of areas that required refinement before finalizing the intervention protocol.
亨廷顿舞蹈症(HD)是一种神经退行性疾病,主要由于基底神经节(BG)萎缩导致认知执行功能和运动功能逐渐丧失。目前,尚无专门针对HD患者执行和运动功能障碍的治疗干预措施。基于音乐的干预措施可能通过利用外部节奏节拍来补偿依赖BG的时间和节奏生成受损,从而有助于提高执行能力。在此,我们应用了一个综合知识转化(IKT)框架,共同设计了一款基于平板电脑的节奏击鼓训练应用程序(HD-DRUM),以刺激HD患者的执行和运动能力。
主要目标是开发一款可供在家使用的HD-DRUM应用程序,该程序能满足HD患者的可及性需求,并能够量化性能改善情况以及评估依从性,以便进行对照临床评估。
应用IKT框架反复完善HD-DRUM的设计。这个过程包括知识使用者参与和共同设计的三个阶段:对HD患者(n = 29)进行基于网络的调查,以了解他们的可及性需求;对基于平板电脑的触摸屏作为硬件解决方案进行可用性测试;对HD-DRUM的设计和构建进行可用性测试,以满足受HD影响的患者及其临床医生(n = 12)已确定的可及性需求。
调查发现,由于认知和运动控制障碍导致了可及性问题,例如查找和浏览信息困难,以及使用电脑键盘和鼠标与应用程序进行交互存在困难。基于平板电脑的触摸屏被确定为可行且易于使用的应用程序交付解决方案。确定并实施了确保应用程序设计和构建满足HD患者需求的关键要素。这些要素包括:使用大尺寸且视觉上有明显区别的按钮,便于在应用程序中进行直观导航;使用音频和视觉提示作为训练指南;以及采用游戏化、积极反馈和跟随背景音乐击鼓的方式来提高积极性和参与度。通过共同设计开发过程,产生了概念验证的HD-DRUM应用程序,此处根据干预描述和复制模板清单对其进行了描述。HD-DRUM可在家中使用,能够量化性能改善情况以及评估临床评估的依从性,通过游戏化将训练难度与用户的表现水平相匹配,并在未来扩大规模以覆盖广泛的感兴趣用户。
应用基于IKT的共同设计框架,让知识使用者参与其中,使得基于平板电脑的HD-DRUM应用程序干预的设计和构建能够反复完善,目的是刺激依赖BG的认知和运动功能。对照干预描述和复制框架模板来映射干预措施,以描述复杂干预措施,从而能够详细描述HD-DRUM干预措施,并确定在最终确定干预方案之前需要完善的领域。