Apathy in Tourette Syndrome and Changes in Quality of Life
Condition: Tourette Syndrome; Apathy
MeSH terms: Tourette Syndrome; Syndrome
Study type: Observational

Summary: 
      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: 
      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.
    

Intervention name(s): Children's Motivation Scale; Yale Global Tic Severity Scale (YGTSS); Studies Depression Scale for Children (CES-DC); Gilles de la Tourette Syndrome Quality Of Life scale; Demographic Data
Intervention type(s): Other; Other; Other; Other; Other
Intervention description(s): A 16-item questionnaire to evaluate level of motivation in children and adolescents completed by the primary caregiver.; 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.; 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; 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).; 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).
Observational model: Case-Control
Time perspective: Cross-Sectional
Sampling method: Non-Probability Sample
Study population: 
        Targeted study population includes patients 12-16 years old diagnosed with Tourette
        Syndrome who are a patient of University of Florida Movement Disorders Center.