Tourette Syndrome has Substantial Impact in Childhood and Adulthood As Well.

Irene Malaty, MD,* Diana Shineman, PhD,† Michael Himle, PhD‡ It was with great interest that we read the study by Wolicki et al., “Children with Tourette Syndrome in the United States: Parent-Reported Diagnosis, Co-Occurring Disorders, Severity, and Influence of Activities on Tics.” The Tourette Association of America (TAA) recently embarked upon a similar project, the 2018 TAA Impact Survey, which involved an online survey of their constituents. Similar to the study of Wolicki, the purpose of the TAA Impact Survey was to better understand the diagnostic and treatment experiences of individuals living with Tourette Syndrome (TS) and other tic disorders (TDs) as well as to understand the broad impact of tics on health and functioning. Despite key methodological and sample differences, the TAA Impact Survey corroborates a number of findings in the study of Wolicki and when examined in conjunction, provides for the complimentary and comprehensive characterization of the longitudinal impact of TS across the life span. One key methodological difference between the studies was how participants were recruited. Although the Centers for Disease Control (CDC) used cold calls to identify households where currently residing children had been diagnosed with TS, the TAA created a webbased survey disseminated to its constituents through the TAA website, email lists, and social media, as well as through the TAA Centers of Excellence program. Both methods allowed for geographic diversity, but the webbased technique allowed for acquisition of a large number of respondents (N 5 944, including 281 adults with TS/TD and 623 parents of children with TS/TD). The cold call method may have offered the advantage of less bias toward individuals associated with a TS society or comfortable with internet-based communication, whereas there may be other bias toward willing participants in phone surveys. Furthermore, the TAA Impact Survey expands upon the CDC survey by including both children with TS/TD, for whom parents completed the survey, and additionally adults with TS/TD, who selfreported about their experiences. Importantly, although the CDC survey asks only about the diagnosis of TS, the TAA Impact Survey included the broader range of TD diagnoses in addition to TS. Despite their methodological differences, the 2 studies found some consistent noteworthy findings. Encouragingly, both studies suggest that diagnosis is being made earlier. Among adults in our study, the modal time between tic onset and diagnosis was 61 years (reported by 53% of the sample), with only 32.4% being diagnosed within 2 years of tic onset. By contrast, the modal time between symptom onset and diagnosis for children was ,2 years (reported by 70.9% of the sample), which is consistent with the study of Wolicki, who reported an average time to diagnosis of 1.7 years. Consistent with the findings of Wolicki et al. regarding a high reliance on specialists to make the diagnosis (51.8% of cases), the TAA Impact Survey examined diagnosing physicians and found that the TS/TD diagnosis was most likely to be conferred by a neurologist (71% for children/63% for adults) or a psychiatrist (11% children/13% adults) rather than a primary care physician or other mental/behavioral health specialist (,15% of cases for each). Although the apparent improvement in time to diagnosis is encouraging, it is sobering that effective treatment remains unsatisfactory. The TAA impact survey confirmed that medication remains commonly prescribed, with 59%/51% (of children and adults, respectively) reporting that they currently take medication for TS/TD and 29%/30% having tried more than 5 medications; yet only 44%/47% report their symptoms From the *Department of Neurology, University of Florida Movement Disorders Center, Gainsville, FL; †Tourette Association of America, Bayside, NY; ‡Department of Psychology, The University of Utah, Salt Lake City, UT.