The Role of Digital Tools in Meeting the Needs of Adults With Tourette Syndrome: A Human-Centered Design Approach

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. 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.

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 adult members of the TD community in the United States.

An online survey was distributed via TD community groups and also via TD clinicians and researchers in the United States. The 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.

Most respondents typically sought answers from digital platforms first (124/158, 78.5%) when confronting a question about their tics. Even so, only 18.4% (29/158) reported having previously used a digital tool to help with their tics or any other aspect of their health. Simultaneously, 88.9% (136/153) indicated that they would be very (81/153, 52.9%) or somewhat (55/153, 35.9%) likely to use a digital tool designed for adults with tics. Of those listing concerns (42/158, 26.6%), common reported concerns included the tool being too time-consuming, difficult to use, or generally not meeting accessibility standards. When asked to rank the one feature of a digital tool that they believed to be most important, tic monitoring (66/154, 42.9%) and trigger monitoring (54/154, 35.1%) were among the most popular requested features as opposed to other options, such as information gathering, reminders to practice a therapeutic skill or take medicine, social support, or opportunities to share their story. While screen navigation was most preferred, results indicated that a multimodal design overall would support the most users.

Our study participants reported a lack of useful technology for tic management and indicated a need for accessible tools to assist in tic and trigger monitoring in particular. Other concerns included that new tools would be difficult to use or learn due to tics. Findings suggest a cautious excitement for future digital tools in this area.