Apathy in Tourette Syndrome and Changes in Quality of Life

Study Overview
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Brief Summary
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Tourette syndrome is a complex neuropsychological disorder with both motor and vocal tics associated with multiple psychological co-morbidities. Apathy has not been widely studied in patients with Tourette syndrome. Apathy can result in decrease in self-care and disease control. In this study investigators will compare the occurrence of apathy in the adolescent Tourette syndrome population (at the UF center for movement disorders and Neurorestoration) to an age and gender matched control population. Investigators will also assess the role of commonly used medications in the Tourette population (neuroleptics and selective serotonin receptor inhibitors) in the occurrence of apathy.

Detailed Description
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Tourette syndrome(TS) is a complex neuropsychological disorder with both motor and vocal tics associated with multiple psychological co-morbidities. The most common co-morbidities include obsessive compulsive disorder (OCD), attention deficit and hyperactivity disorder (ADHD) and depression. Apathy has not been extensively studied in the Tourette syndrome population. Apathy is currently defined as reduced motivation, with symptoms in at least two of three domains of reduced initiative, reduced interest and/or reduced emotional responsiveness. A study assessed the prevalence of apathy in multiple movement disorders and reported that apathy is much more common in disorders associated with slowed movements like Parkinson disease while less common in disorders with increased movements like Huntington disease and Tourette syndrome in adults. However, no apathy studies in adolescent patients with Tourette syndrome are published. Disengagement from treatment may affect health outcomes in other disease states. Apathy has significant effects on the quality of life and health outcomes in many patients. Apathy can be a direct manifestation of the neuropsychological process (intrinsic to the disease) or can be secondary to medication side effects most notably anti-dopaminergic agents and some reports of selective serotonin receptor inhibitors (SSRI). Further attention to the prevalence and impact of apathy in the adolescent Tourette syndrome population is needed to explore if this may be a factor influencing TS management and ultimately Quality of life (QOL). Multiple psychotropic medications are used in the management of tics as well as the psychological co-morbidities. How these medications affect apathy prevalence in Tourette syndrome patients is not known.

Official Title
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Apathy in Tourette Syndrome and Changes in Quality of Life - Effect of Medications

Conditions
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Tourette Syndrome, Apathy

Intervention / Treatment
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* Other: Children's Motivation Scale
* Other: Yale Global Tic Severity Scale (YGTSS)
* Other: Studies Depression Scale for Children (CES-DC)
* Other: Gilles de la Tourette Syndrome Quality Of Life scale
* Other: Demographic Data


Participation Criteria
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Eligibility Criteria
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Inclusion Criteria: Diagnosis: Tourette syndrome Age: 12-16 years Followed at the CMDNR Exclusion Criteria: History of cerebral palsy or traumatic brain injury

Ages Eligible for Study
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Minimum Age: 12 Years
Maximum Age: 16 Years

Sexes Eligible for Study
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All

Accepts Healthy Volunteers
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No

Study Plan
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How is the study designed?
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Arms and Interventions

| Participant Group/Arm | Intervention/Treatment |
| --- | --- |
| Patients with Tourette Syndrome<br>The primary caregiver will be asked to fill the Children's motivation Scale. Other measures will be collected including a clinician filled Yale Global Tic Severity Scale (YGTSS) - severity score, Center for Epidemiological Studies Depression Scale for Children (CES-DC) and Gilles de la Tourette Syndrome Quality Of Life scale (GTS-QOL). Demographic data will also be collected for each study patient. Demographic data will also be collected for each study patient. | Other: Children's Motivation Scale<br>* A 16-item questionnaire to evaluate level of motivation in children and adolescents completed by the primary caregiver.<br>Other: Yale Global Tic Severity Scale (YGTSS)<br>* Clinician administered questionnaire given to Tourette patients. Part 1 asks about 10 types of motor tics, 12 types of vocal tics (current, ever, age of onset, description). Part 2 is a severity rating that scores both motor and vocal tics on a 0-5 scale for each severity item: number of tics, intensity, frequency, complexity, interference, impairment. Totals are summed for all items.<br>Other: Studies Depression Scale for Children (CES-DC)<br>* Clinician administered questionnaire given to Tourette patients. Consisting of 20 items, respondents are asked to indicate how strongly they have felt a certain way during the past week using a Likert-type scale that ranges from not at all to a lot. Only two items on the questionnaire relate specifically to sleep or fatigue. CES-DC is a validated score for assessing depression in children and adolescents<br>Other: Gilles de la Tourette Syndrome Quality Of Life scale<br>* Clinician administered questionnaire given to Tourette patients. Gilles de la Tourette Syndrome Quality Of Life scale (GTS-QOL) is a recently validated score for the assessment of quality of life in patients with Tourette syndrome. Consisting of a 27-item GTS-specific HR-QOL scale (GTS-QOL) with four subscales (psychological, physical, obsessional, and cognitive).<br>Other: Demographic Data<br>* Data will be collected including: age, age at disease onset, gender, current medication regimen and presence of co-morbidities (like a diagnosis of ADHD, OCD, depression or insomnia).<br>|
| Patients with Diabetes type 1<br>The primary caregiver will be asked to fill the Children's motivation Scale. Demographic data will also be collected for each study patient. | Other: Children's Motivation Scale<br>* A 16-item questionnaire to evaluate level of motivation in children and adolescents completed by the primary caregiver.<br>|

What is the study measuring?
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Primary Outcome Measures

| Outcome Measure | Measure Description | Time Frame |
| --- | --- | --- |
| Children's Motivation Scale | A 16-item questionnaire to evaluate level of motivation in children and adolescents completed by the primary caregiver. | Day 1 | 

Secondary Outcome Measures

| Outcome Measure | Measure Description | Time Frame |
| --- | --- | --- |
| Yale Global Tic Severity Scale (YGTSS) | Clinician administered questionnaire given to Tourette patients. Part 1 asks about 10 types of motor tics, 12 types of vocal tics (current, ever, age of onset, description). Part 2 is a severity rating that scores both motor and vocal tics on a 0-5 scale for each severity item: number of tics, intensity, frequency, complexity, interference, impairment. Totals are summed for all items. | Day 1 | 
| Studies Depression Scale for Children (CES-DC) | Clinician administered questionnaire given to Tourette patients. Consisting of 20 items, respondents are asked to indicate how strongly they have felt a certain way during the past week using a Likert-type scale that ranges from not at all to a lot. Only two items on the questionnaire relate specifically to sleep or fatigue. CES-DC is a validated score for assessing depression in children and adolescents | Day 1 | 
| Gilles de la Tourette Syndrome Quality Of Life scale | Clinician administered questionnaire given to Tourette patients. Gilles de la Tourette Syndrome Quality Of Life scale (GTS-QOL) is a recently validated score for the assessment of quality of life in patients with Tourette syndrome. Consisting of a 27-item GTS-specific HR-QOL scale (GTS-QOL) with four subscales (psychological, physical, obsessional, and cognitive). | Day 1 |