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

Abstract

David A Isaacs,1,2 Kemberlee Bonnet,3 Michelle R Eckland,1 Kimberly Markowitz,4 Maria Pena,5 David G Schlundt3 1Department of Neurology, Vanderbilt University Medical Center, Nashville, TN, USA; 2Department of Pediatrics, Division of Pediatric Neurology, Monroe Carell Jr. Children’s Hospital at Vanderbilt, Nashville, TN, USA; 3Department of Psychology, Vanderbilt University, Nashville, TN, USA; 4Department of Neuroscience, Vanderbilt University, Nashville, TN, USA; 5College of Nursing, University of Florida, Gainesville, FL, USACorrespondence: David A Isaacs, Department of Neurology, Vanderbilt University Medical Center, 1161 21st Ave South, A-0118 MCN, Nashville, TN, 37232, USA, Tel [phone], Fax [phone], Email [email protected]: 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

Keywords

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