Exploring the impact of chronic tic disorders on youth: results from the Tourette Syndrome Impact Survey

Abstract

Prior research has demonstrated that chronic tic disorders (CTD) are associated with functional impairment across several domains. However, methodological limitations, such as data acquired by parental report, datasets aggregated across child and adult samples, and small treatment-seeking samples, curtail interpretation. The current study explored the functional impact of tics among youth in a large, "virtual" community sample. An Internet-based survey was completed by families with children who had CTD. The sample included 740 parents and 232 of their children (ages 10-17 years). The survey assessed impact across five functional domains: physical, social, familial, academic, and psychological. Health-related quality of life and perceptions of discrimination resulting from tics were also assessed. Results suggest that (1) youth with CTD experience mild to moderate functional impairment, (2) impairment is generally positively correlated with tic severity, (3) children with CTD plus one or more co-occurring psychiatric conditions tend to have greater functional impairment, and (4) a notable portion of youth with CTD experience discrimination due to tics. Implications and limitations of these findings are discussed.