Perspectives from Adults with Tourette Syndrome on Research Priorities and Registry Development: A Focus Group Study

Abstract

Purpose

Adults with Tourette syndrome (TS) have worse mental health, physical health, and quality of life than the general population. The factors contributing to negative outcomes across multiple health domains in adults with TS remain uncertain, in part due to a lack of longitudinal studies in this population. In attempt to address these knowledge gaps, our center has initiated development of a regional registry for adults with TS. During the goal-setting and design phase of registry development, we conducted focus groups with adults with TS to identify research issues of greatest importance to this population and to obtain feedback on design and implementation of an adult TS registry.

Patients and Methods

Participants were recruited from a tertiary care adult TS clinic and from institutional research registries. Focus groups were conducted online and were moderated by a qualitative research expert. Qualitative data analysis was performed using an iterative inductive/deductive approach.

Results

Across four focus groups, adult TS participants (n=22) expressed a variety of research priorities, including developing more effective treatments for tics, identifying risk factors for tic persistence into adulthood, clarifying the interaction between TS symptoms and women’s health, clarifying the relationships between TS and other mental and physical health disorders, and addressing day-to-day living issues. Focus group participants were generally enthusiastic about creation of an adult TS registry. They indicated that adults with TS are more likely to engage with a registry that logistically accommodates participants (eg, by offering a wide range of visit times, by providing telehealth options) and that fosters bidirectional interaction (eg, by disseminating results regularly, by involving participants in registry design and implementation, by notifying participants of support resources).

Conclusion

Focus group input clarifies the research priorities of adults with TS and will inform the ongoing development of an adult TS registry.

Keywords:

• tic disorder
• patient registry
• neurodevelopmental disorder
• movement disorder

Ethics Approval and Informed Consent

The study was approved by the Vanderbilt University IRB (study #21210) and was conducted in accordance with the 1964 Declaration of Helsinki and its later amendments. All participants verbally consented and waived the right to document written consent.

Author Contributions

All authors made a significant contribution to the work reported, whether that is in the conception, study design, execution, acquisition of data, analysis and interpretation, or in all these areas; took part in drafting, revising or critically reviewing the article; gave final approval of the version to be published; have agreed on the journal to which the article has been submitted; and agree to be accountable for all aspects of the work.

Disclosure

David Isaacs receives grant funding from Teva Branded Pharmaceutical Products, R&D, Inc. The authors report no other conflicts of interest in this work.

Additional information

Funding

This work was supported by the Tourette Association of America (072720), the National Center for Advancing Translational Sciences (UL1TR002243), and the National Institute of Neurological Disorders and Stroke (1K23NS131592-01). The funding sources were not involved in study design; data collection, analysis, or interpretation; manuscript preparation; or decision to submit the article for publication.