Abstract Details

Title Diagnosis and Treatment Experiences in a Real-World Sample of Tourette Syndrome and Tic Disorder Sufferers

Topic Movement Disorders

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

Poster/Presentation
Number 10-037

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.

Design/Methods 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 (</=10%), and psychiatrists (15%). Comprehensive behavioral therapy for tics (CBIT) was tried by only 36% of children and 25% of adults, with lack of awareness being the most common hindrance. Benefit was appreciated by 40% of children and 36% of adults who tried CBIT. The majority of respondents take medication to manage TS/TD (51% adult; 59% children). Less than 10% are medication naïve. Most have tried multiple medications: (1-3)- 41%;44%, (3-5)- 19%;15%, and (more than 5)- 29%;30% of children and adults, respectively. Nevertheless, 44% of children and 46% of adults feel their symptoms are inadequately controlled.

Conclusions 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.

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.

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