JMIR Publications

ABSTRACT

Background:

Individuals with tic disorders (TDs) have access to a small but growing number of digital tools (such as apps and websites) for tic management and support. While prior work has shown promise for these tools, they have traditionally been designed by researchers first and evaluated by members of the TD community after tool development is complete. A human-centered design process targeting this domain has the potential to reveal new insights relevant to the development of future tools. Here, we seek to establish a preliminary understanding of how the TD community uses and perceives current resources for tic management and support, as well as their overall concerns and needs in this area.

Objective:

This study aimed to explore the design potential of future digital tools for helping adults manage their tics by gathering an initial set of needs and requirements from the tic disorders community in the United States. 

Methods:

170 adult members of the tic disorders community representing 43 states across the US accessed the online survey, with 153 fully completing and 7 partially completing the survey (data is included for the latter when available). The vast majority of participants (n=146) reported they had received a formal  diagnosis of Tourette Syndrome while the remainder (n=10) had been diagnosed with another form of tic disorder. The online survey contained a combination of dichotomous, multiple-choice, and open-ended questions, with opportunities for participants to specify how they currently receive support, rank their preferred features and requirements, and express their needs and concerns relevant to future work. Qualitative responses were analyzed with inductive thematic analysis. 

Results:

The majority of respondents (78.8%) typically sought answers from digital platforms first (n=126/160) rather than people (n=34/160) such as primary care physicians when confronting a question about their tics. Even so, only twenty-nine individuals (n=29/160, 18.1%) reported having previously used a digital tool to help with their tics or any other aspect of their health. Simultaneously, 88.9% indicated that they would be very (n=81/153) or somewhat (n=55/153) likely to use a digital tool designed for adults with tics. Of those listing concerns, 76.2% (n=32/42) worried that the tool’s design or usage would be too complicated or not provide features they need as members of the tic disorders community. When asked to rank the one feature of a digital tool that they believed to be most important, tic monitoring (n=66/153, 43.1%) and trigger monitoring (n=54/153, 35.3%) were among the most popular requested features as opposed to other options such as (for example) information gathering, reminders to practice a therapeutic skill or take medicine, social support, or opportunities to share their story. Further results indicated that while screen navigation was most preferred, a multimodal design overall would support the most users. 

Conclusions:

Our study participants reported a lack of useful technology for tic management and indicated a clear need for accessible tools to assist in tic and trigger monitoring in particular. Additionally, a considerable number of participants noted that they were concerned new tools would be tedious to use or would not take the challenges of encountering tics into account, especially when they would be using the tool or learning how to use it. Findings overall suggest a cautious excitement for future digital tools in this area.