Design of a Multisite Study Assessing the Impact of Tic Disorders on Individuals, Families, and Communities

Abstract

Background Tic disorders, including Tourette syndrome, are complex, multi-symptom diseases, yet, the impact of these disorders on affected children, families, and communities is not well understood. Methods To improve the understanding of the impacts of Tourette syndrome, two research groups conducted independent cross-sectional studies using qualitative and quantitative measures. They focused on similar themes, but distinct scientific objectives, and the sites collaborated to align methods of independent research proposals with the aim of increasing the analyzable sample size. Results Site 1 (University of Rochester) was a Pediatric Neurology referral center. Site 2 (University of South Florida) was a Child Psychiatry referral center. A total of 205 children with tic disorders were enrolled from both studies. The University of Rochester also enrolled 100 control children in order to clearly isolate impacts of Tourette syndrome distinct from those occurring in the general population. The majority of children with tic disorders (n=191, 93.1%) had Tourette syndrome, the primary population targeted for these studies. Children with Tourette syndrome were similar across sites in terms of tic severity and the occurrence of co-morbid conditions. The occurrence of psychiatric comorbidities in the control group was comparable to that in the general pediatric population of the United States, making this a well-justified comparison group. Conclusions Through collaboration, two sites conducting independent research developed convergent research methods to enable pooling of data, and by extension increased power, for future analyses. This method of collaboration is a novel model for future epidemiological research of tic disorders.

Targeted Interventions in Tourette’s using Advanced Neuroimaging and Stimulation (TITANS): study protocol for a double-blind, randomised controlled trial of transcranial magnetic stimulation (TMS) to the supplementary motor area in children with Tourette’s syndrome

“… 6 Many children with TS have difficulties maintaining friendships, are bullied and teased, need individualised learning plans to accommodate tic expression in the classroom and require a significant portion of family resources to help manage their disorder. 7 This in turn can lead to lower educational attainment, poor employment outcomes and life-long difficulties maintaining relationships.…”

Validation of the Anger Expression Scale for Children With Fourth and Fifth Graders: Implications for Identifying Students at Risk for Behavior Problems

“…One such student-report measure is the Anger Expression Scale for Children (AESC; Steele, Legerski, Nelson, & Phipps, 2009), which the authors developed to address past problems with accurate assessment of anger expression (e.g., suppression) and anger control in children and adolescents. There is evidence that the AESC is a reliable and valid instrument in school settings, and it has been used in multiple studies (e.g., Augustine et al, 2017;Daunic et al, 2012;Davis, Parra, & Phipps, 2010). Yet there is a need to assess the validity of the AESC (Steele et al, 2009) with upper elementary school populations-a key prevention and intervention period.…”