Session Information
Date: Tuesday, September 24, 2019
Session Title: Tics/Tourette
Session Time: 1:45pm-3:15pm
Location: Les Muses Terrace, Level 3
Objective: To explore the impact of tic disorders on life outcomes in a “real world” sample of Tourette syndrome (TS) and tic disorder (TD) sufferers.
Background: TS a complex, childhood-onset neuropsychiatric disorder which can impact quality of life among sufferers. TS and TD may impact educational, occupational, and personal life.
Method: A web-based survey was conducted by the Tourette Association of America, disseminated electronically to its membership (Jan-May/2018). Participants were informed that data would be aggregated and used anonymously to assess impact 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). Educational success was felt to be hindered by TS/TD in children/adults: 83.4%/76.7%. For children, 39.8% had to miss school due to TS/TD, 42.5% reported being discriminated against by teachers, and 35.3% reported not being provided with an education consistent with intellectual ability, although 69.4% reported some educational accommodations. Among adults, only 24.2% had been offered educational modifications, 49.2% missed school/work due to TS/TD-related problems, and 20% reported that the educational deficiencies limited their career options. Family financial strain due to TS/TD was reported in 43%/15% (children/adults), with the most common reason being high cost of services needed. Government healthcare (Medicaid, Medicare, CHIP) was being received by 18%/27%, and Social Security Disability benefits for TS/TD and related conditions was received by 4%/10%. Personal impact of TS/TD also included experience of discrimination due to TS/TD in the majority 63%/68%. Adult respondents reported that TS/TD prevented them from having meaningful friendships or romantic relationships (43.75%). Substance abuse was reported by 25% of adult respondents.
Conclusion: TS and TD sufferers report impact on their educational, occupational, financial, and personal well-being. Continued work in education and treatment of these conditions is needed to reduce the detriment to quality of life.
To cite this abstract in AMA style:
I. Malaty, D. Shineman, W. Deeb. The Impact of Tourette Syndrome and Tic Disorders on Education, Occupational and Personal Life [abstract]. Mov Disord. 2019; 34 (suppl 2). https://www.mdsabstracts.org/abstract/the-impact-of-tourette-syndrome-and-tic-disorders-on-education-occupational-and-personal-life/. Accessed May 10, 2025.« Back to 2019 International Congress
MDS Abstracts - https://www.mdsabstracts.org/abstract/the-impact-of-tourette-syndrome-and-tic-disorders-on-education-occupational-and-personal-life/