Objective: To explore diagnosis and treatment experiences in a “real world” sample of Tourette syndrome and tic disorders.

Background: Tourette syndrome (TS) is a complex, childhood-onset neuropsychiatric disorder for which appropriate education and management is critical. Expert care for tic disorders (TD) is grossly limited.

Method: A web-based survey was conducted by the Tourette Association of America (TAA), disseminated electronically to its membership (Jan-May/2018). Participants were informed that data would be used anonymously in aggregate to assess impact and experience of living with TS/TD. For respondents under 18yo, parents completed the survey.

Results: 944 Respondents completed the survey- 623 pediatric (parent-completed) and 281 adult (self-completed). Adults with TS reported experiencing greater than 6-year delay in diagnosis in 53% of cases; under 16% were diagnosed within a year of symptom onset. Children were diagnosed sooner, although only 33% within one year, and 5% after more than 6 years. Neurologists were the first to diagnose over 60% of cases, versus primary care/pediatricians (

Conclusion: Individuals with TS and tic disorders report delay in diagnosis. Neurologists are often the “front line” diagnosticians, emphasizing the necessity of TS education. Behavioral therapies remain underutilized, and many medications are tried without satisfactory relief. Future efforts are needed to improve TS and tic disorder education and care.

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MDS Abstracts - https://www.mdsabstracts.org/abstract/diagnosis-and-treatment-experiences-in-a-real-world-sample-of-tourette-syndrome-and-tic-disorder-sufferers/