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

David A Isaacs; Kemberlee Bonnet; Michelle R Eckland; Kimberly Markowitz; Maria Pena; David G Schlundt

doi:10.2147/NDT.S442131

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

Neuropsychiatr Dis Treat. 2024 Feb 9:20:257-269. doi: 10.2147/NDT.S442131. eCollection 2024.

Authors

David A Isaacs^{1

2}, Kemberlee Bonnet³, Michelle R Eckland¹, Kimberly Markowitz⁴, Maria Pena⁵, David G Schlundt³

Affiliations

¹ Department of Neurology, Vanderbilt University Medical Center, Nashville, TN, USA.
² Department of Pediatrics, Division of Pediatric Neurology, Monroe Carell Jr. Children's Hospital at Vanderbilt, Nashville, TN, USA.
³ Department of Psychology, Vanderbilt University, Nashville, TN, USA.
⁴ Department of Neuroscience, Vanderbilt University, Nashville, TN, USA.
⁵ College of Nursing, University of Florida, Gainesville, FL, USA.

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: movement disorder; neurodevelopmental disorder; patient registry; tic disorder.

Grants and 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.