Tourette's syndrome (TS) is a childhood-onset tic disorders that is associated with a spectrum of co-occurringneuropsychiatric problems (particularly ADHD and OCD) and that has been found to be much more commonthan once thought. Taken together, the features of TS can be disabling and have significant impacts onindividuals with the condition, their families and their communities. Systematic collection of accurate dataregarding these impacts is a prerequisite for the development of interventions and for changes in health carepolicies and services aimed at reducing the negative consequences of TS. In keeping with the RFA, wepropose to recruit 100 youth probands with TS (and their parents and siblings) and 100 matched healthycontrol youth (and their parents and siblings). The subjects will be administered a standardized battery ofvalidated self-report, interview-based and teacher-report instruments in order to: 1) obtain demographicinformation, 2) define the tic disorder and its severity, 3) define the presence and severity of co-occurringneuropsychiatric conditions, 4) assess the impacts on individuals with TS (quality of life [QoL], and overall,school and social functioning), 5) assess the impacts on families (parent QoL, family functioning,socioeconomic, sibling QoL, and overall, school and social functioning), and 6) assess the impacts on thecommunity (estimated costs of additional educational, social, health care and economic resources).The impacts of TS will be assessed by comparing TS and control subjects/families. These groups will also becompared to national survey data. In order to identify the best targets for intervention, we will use regressionanalysis to determine which demographic and clinical features and measured impacts most closely correlatewith (predict) measured QoL in individuals with TS and their families (parents).
Children with Tourette's syndrome (TS) have chronic movement and noise tics and often have other behavioral problems. The condition is much more common the once thought. Taken together, the symptoms of TS can have a variety of negative consequences for the children with the condition, their families and their communities. As examples of community impacts, children with TS often require special educational services and resources in the schools or extra health care services. Our study is aimed at carefully collecting information about the impacts of TS with the goal of identifying the best targets for new interventions to lessen the identified burdens.
| Augustine, E F; Adams, H R; Bitsko, R H et al. (2017) Design of a Multisite Study Assessing the Impact of Tic Disorders on Individuals, Families, and Communities. Pediatr Neurol 68:49-58.e3 |
| Lewin, Adam B; Mink, Jonathan W; Bitsko, Rebecca H et al. (2014) Utility of the diagnostic interview schedule for children for assessing Tourette syndrome in children. J Child Adolesc Psychopharmacol 24:275-84 |
| Augustine, Erika F; Blackburn, Joanna; Pellegrino, Joan E et al. (2013) Myoclonus-dystonia syndrome associated with Russell Silver syndrome. Mov Disord 28:841-2 |
