Morgan-Jones Philippa, Jones Annabel, Busse Monica, Mills Laura, Pallmann Philip, Drew Cheney, Arnesen Astri, Wood Fiona
School of Engineering, Cardiff University, Cardiff, United Kingdom.
Division of Population Medicine, Cardiff University, Cardiff, United Kingdom.
JMIR Form Res. 2022 Jun 29;6(6):e36870. doi: 10.2196/36870.
There are early indications that lifestyle behaviors, specifically physical activity and sleep, may be associated with the onset and progression of Huntington disease (HD). Wearable activity trackers offer an exciting opportunity to collect long-term activity data to further investigate the role of lifestyle, physical activity, and sleep in disease modification. Given how wearable devices rely on user acceptance and long-term adoption, it is important to understand users' perspectives on how acceptable any device might be and how users might engage over the longer term.
This study aimed to explore the perceptions, motivators, and potential barriers relating to the adoption of wearable activity trackers by people with HD for monitoring and managing their lifestyle and sleep. This information intended to guide the selection of wearable activity trackers for use in a longitudinal observational clinical study.
We conducted a mixed methods study; this allowed us to draw on the potential strengths of both quantitative and qualitative methods. Opportunistic participant recruitment occurred at 4 Huntington's Disease Association meetings, including 1 international meeting and 3 United Kingdom-based regional meetings. Individuals with HD, their family members, and carers were invited to complete a user acceptance questionnaire and participate in a focus group discussion. The questionnaire consisted of 35 items across 8 domains using a 0 to 4 Likert scale, along with some additional demographic questions. Average questionnaire responses were recorded as positive (score>2.5), negative (score<1.5), or neutral (score between 1.5 and 2.5) opinions for each domain. Differences owing to demographics were explored using the Kruskal-Wallis and Wilcoxon rank sum tests. Focus group discussions (conducted in English) were driven by a topic guide, a vignette scenario, and an item ranking exercise. The discussions were audio recorded and then analyzed using thematic analysis.
A total of 105 completed questionnaires were analyzed (47 people with HD and 58 family members or carers). All sections of the questionnaire produced median scores >2.5, indicating a tendency toward positive opinions on wearable activity trackers, such as the devices being advantageous, easy and enjoyable to use, and compatible with lifestyle and users being able to understand the information from trackers and willing to wear them. People with HD reported a more positive attitude toward wearable activity trackers than their family members or caregivers (P=.02). A total of 15 participants participated in 3 focus groups. Device compatibility and accuracy, data security, impact on relationships, and the ability to monitor and self-manage lifestyle behaviors have emerged as important considerations in device use and user preferences.
Although wearable activity trackers were broadly recognized as acceptable for both monitoring and management, various aspects of device design and functionality must be considered to promote acceptance in this clinical cohort.
有早期迹象表明，生活方式行为，特别是体育活动和睡眠，可能与亨廷顿舞蹈症（HD）的发病和进展有关。可穿戴活动追踪器为收集长期活动数据提供了一个令人兴奋的机会，以便进一步研究生活方式、体育活动和睡眠在疾病改善中的作用。鉴于可穿戴设备依赖用户接受度和长期使用，了解用户对任何设备的可接受程度以及用户如何长期使用是很重要的。
本研究旨在探讨HD患者采用可穿戴活动追踪器来监测和管理其生活方式及睡眠的认知、动机和潜在障碍。这些信息旨在指导为纵向观察性临床研究选择可穿戴活动追踪器。
我们进行了一项混合方法研究；这使我们能够利用定量和定性方法的潜在优势。在4次亨廷顿舞蹈症协会会议上进行了机会性参与者招募，包括1次国际会议和3次英国地区会议。邀请HD患者、他们的家庭成员和护理人员完成一份用户接受度问卷，并参加焦点小组讨论。问卷由8个领域的35个项目组成，采用0至4的李克特量表，以及一些额外的人口统计学问题。每个领域的问卷平均得分被记录为积极（得分>2.5）、消极（得分<1.5）或中性（得分在1.5至2.5之间）意见。使用Kruskal-Wallis和Wilcoxon秩和检验探索因人口统计学因素导致的差异。焦点小组讨论（用英语进行）由一个主题指南、一个小场景和一个项目排序练习驱动。讨论进行了录音，然后使用主题分析进行分析。
共分析了105份完整的问卷（47名HD患者和58名家庭成员或护理人员）。问卷的所有部分中位数得分>2.5，表明对可穿戴活动追踪器有积极意见的倾向，例如这些设备具有优势、使用方便且有趣，与生活方式兼容，用户能够理解追踪器的信息并愿意佩戴。HD患者对可穿戴活动追踪器的态度比他们的家庭成员或护理人员更积极（P = 0.02）。共有15名参与者参加了3个焦点小组。设备兼容性和准确性、数据安全性、对人际关系的影响以及监测和自我管理生活方式行为的能力已成为设备使用和用户偏好的重要考虑因素。
尽管可穿戴活动追踪器被广泛认为可用于监测和管理，但必须考虑设备设计和功能的各个方面，以促进该临床队列的接受度。
