Apathy in Tourette Syndrome and Changes in Quality of Life

NCT02765178 | Completed

• 1 other identifier: IRB201500989
• Study Type: observational
• Target: 38
• Locations: 1 country
• Sites: 1

Brief 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.

Conditions

Tourette Syndrome; Apathy

Outcome Measures

Primary Outcomes (1)

• 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 Outcomes (3)

• Yale Global Tic Severity Scale (YGTSS)

  Day 1

• Studies Depression Scale for Children (CES-DC)

  Day 1

• Gilles de la Tourette Syndrome Quality Of Life scale

  Day 1

Study Arms (2)

Patients with Tourette Syndrome

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; 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

Patients with Diabetes type 1

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

Interventions

Children's Motivation Scale OTHER

A 16-item questionnaire to evaluate level of motivation in children and adolescents completed by the primary caregiver.

Patients with Diabetes type 1; Patients with Tourette Syndrome

Yale Global Tic Severity Scale (YGTSS) OTHER

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.

Patients with Tourette Syndrome

Studies Depression Scale for Children (CES-DC) OTHER

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

Patients with Tourette Syndrome

Gilles de la Tourette Syndrome Quality Of Life scale OTHER

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).

Patients with Tourette Syndrome

Demographic Data OTHER

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).

Patients with Tourette Syndrome

Eligibility Criteria

• Age: 12 Years - 16 Years
• Sex: all
• Healthy Volunteers: No
• Age Groups: Child (0-17)
• 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.

You may qualify if:

• Diagnosis: Tourette syndrome
• Age: 12-16 years
• Followed at the CMDNR

You may not qualify if:

• History of cerebral palsy or traumatic brain injury

Sponsors & Collaborators

• University of Florida: lead

Study Sites (1)

UF Center for Movement Disorders and Neurorestoration

Gainesville, Florida, 32607, United States

Location

MeSH Terms

Conditions

Tourette Syndrome; Lethargy

Interventions

Demography

Condition Hierarchy (Ancestors)

Basal Ganglia Diseases; Brain Diseases; Central Nervous System Diseases; Nervous System Diseases; Tic Disorders; Movement Disorders; Heredodegenerative Disorders, Nervous System; Neurodegenerative Diseases; Genetic Diseases, Inborn; Congenital, Hereditary, and Neonatal Diseases and Abnormalities; Neurodevelopmental Disorders; Mental Disorders; Neurobehavioral Manifestations; Neurologic Manifestations; Signs and Symptoms; Pathological Conditions, Signs and Symptoms

Intervention Hierarchy (Ancestors)

Population Characteristics; Epidemiologic Measurements; Public Health; Environment and Public Health

Study Officials

• Wissam Deeb

  UF Center for Movement Disorders and Neurorestoration

  PRINCIPAL INVESTIGATOR

Study Design

• Study Type: observational
• Observational Model: CASE CONTROL
• Time Perspective: CROSS SECTIONAL
• Sponsor Type: OTHER
• Responsible Party: SPONSOR

Study Record Dates

• First Submitted: May 4, 2016
• First Posted: May 6, 2016
• Study Start: April 1, 2016
• Primary Completion: March 1, 2017
• Study Completion: April 1, 2017
• Last Updated: July 6, 2017

Record last verified: 2017-07

Data Sharing

• IPD Sharing: Will not share

Locations

US (1)