Abstract Details

Title The Impact of Tourette Syndrome and Tic Disorders on ��ɫ��, Occupational, and Personal Life

Topic Movement Disorders

Presentation(s) P4 - Poster Session 4 (5:30 PM-6:30 PM)

Poster/Presentation
Number 10-040

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.

Design/Methods 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). ��ɫ��al success was felt to be hindered by TS/TD in children/adult: 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%, 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.

Conclusions 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.

Authors/Disclosures
Irene Malaty, MD, FAAN (University of Florida) PRESENTER	Dr. Malaty has received personal compensation in the range of $10,000-$49,999 for serving as a Consultant for Abbvie. Dr. Malaty has received personal compensation in the range of $500-$4,999 for serving as a Consultant for Aevum. The institution of Dr. Malaty has received research support from Abbvie. The institution of Dr. Malaty has received research support from Revance. The institution of Dr. Malaty has received research support from Parkinson Foundation. The institution of Dr. Malaty has received research support from SAGE. The institution of Dr. Malaty has received research support from Emalex. The institution of Dr. Malaty has received research support from Acadia. Dr. Malaty has received publishing royalties from a publication relating to health care. Dr. Malaty has received personal compensation in the range of $500-$4,999 for serving as a Speaker & Center of Excellence Director with Parkinson Foundation. Dr. Malaty has a non-compensated relationship as a MAB member & Center of Excellence Directory with Tourette Association of America that is relevant to AAN interests or activities.
Wissam G. Deeb, MD (UMass Memorial)	Dr. Deeb has a non-compensated relationship as a Board member with Davis Phinney Foundation that is relevant to AAN interests or activities.
	No disclosure on file

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