JMIR Publications

ABSTRACT

Background:

There are early indications that lifestyle behaviours, and specifically physical activity and sleep, may be associated with both onset and progression of Huntington’s disease (HD). Wearable activity trackers offer an exciting opportunity to collect much needed long-term activity data to further investigate the role of lifestyle, physical activity and sleep in disease modification. Given how wearable devices are reliant on user acceptance and long-term adoption, it is important to understand users’ perspectives of how acceptable any device might be and how users might engage over the longer term.

Objective:

This study aimed to explore the perceptions, motivators, and potential barriers to people with HD adopting wearable activity trackers to monitor and manage their lifestyle and sleep. This information had the intended purpose of guiding the selection of a wearable activity tracker for use in a longitudinal, observational clinical study.

Methods:

We undertook a mixed methods study allowing us to draw on the potential strengths of both quantitative and qualitative methods. Opportunistic participant recruitment occurred at four HD Association meetings including an international meeting and three UK-based regional meetings. Individuals with HD and their family members/carers were invited to complete a user acceptance questionnaire and take part in a focus group discussion. The questionnaire consisted of 35 items across eight domains using a 0-4 Likert scale, plus some additional demographic questions. Average questionnaire responses were recorded as a positive (score > 2.5), negative (score < 1.5) or neutral (score 1.5-2.5) opinion per domain. Differences due to demographics were explored through Kruskal-Wallis and Wilcoxon rank-sum tests. Focus group discussions (conducted in English) were driven by a topic guide, vignette-scenario and item ranking exercise. Discussions were audio recorded and thematically analysed.

Results:

105 completed questionnaires were analysed (47 people with HD; 58 family members/carers). All sections of the questionnaire produced median scores greater than 2.5, representing a tendency for positive opinions towards wearable activity trackers (devices being advantageous, easy and enjoyable to use, compatible with lifestyle; users being able to understand the information from trackers and willing to wear them). People with HD reported a more positive attitude to wearable activity tracker than their family members/carers (p=0.017). Fifteen participants took part in three focus groups. Device compatibility and accuracy, data security, impact on relationships and ability to monitor and self-manage lifestyle behaviours emerged as important considerations in device use and preferences.

Conclusions:

Whilst wearable activity tracker were broadly recognized as acceptable for both monitoring and management, aspects of device design and functionality must be considered to promote acceptance in this clinical cohort. Clinical Trial: Study Registration: ISRCTN12103732