Tourette Discrimination (TD) Stigma Scale

NCT05696769 | Completed

• 1 other identifier: IRB00080472
• Study Type: observational
• Target: 43
• Locations: 1 country
• Sites: 1

Brief Summary

The goal of this qualitative study is to understand the challenges of stigmatization and discrimination in children and young adults with Chronic Tic Disorders (CTD), including Tourette Syndrome. Measuring and understanding how stigma affects those with CTD will help inform future work.

Conditions

Tourette Syndrome; Tourette Syndrome in Children; Tourette Syndrome in Adolescence; Tic Disorder, Childhood; Tics

Keywords

Stigma

Outcome Measures

Primary Outcomes (1)

• Change in Tourette Discrimination-Stigmatization (TD-STIGMA) scores

  Confirmatory factor analysis will be used to assess the factor structure of the hypothesized domains. Mean TD-STIGMA scores will be calculated. Internal consistency (both overall and within each domain) will be evaluated using Cronbach's alpha. Intraclass correlation will be used to evaluate test-retest reliability by retesting a subset of participants (n=20) two weeks after test administration. Some items may be removed from the list based on the results of the factor analysis, internal consistency, and test-retest evaluation. Both convergent validity and known-group validity will be evaluated. Analyses will use SAS 9.3.

  Month 7

Other Outcomes (2)

• Qualitative Interviews

  3 hours

• Tourette Discrimination-Stigmatization (TD-STIGMA) Scale psychometric properties

  Month 4

Study Arms (6)

Youth with CTD Ages 8-12

Youth (8-12 years) will be recruited for a qualitative interview using the exploratory questionnaire developed for the study. Parent/caregivers will also be asked questions related to their child's CTD. Participants will be asked for feedback on the ease of completion, content, readability and completion time. After development of the TD Stigma scale, prior and new participants with CTD will be asked to complete the TD-Stigma scale with companion measures. Feedback on the scale will be elicited as well.

Supporters: Parents/Caregivers

Qualitative interviews will be administered and adapted to the caregiver's perspective. Parents/caregivers will also be asked to complete questionnaires child's CTD history, family history and impact of CTD on different aspects of the child's life. Participants will be asked for feedback on the ease of completion, content, readability and completion time.

Provider/ advocate cohort

For providers and advocates, qualitative interview administered will begin with the participant's experience and qualifications in caring for individuals with CTD and adapted to the provider's perspective. Participants will be asked for feedback on the ease of completion, content, readability and completion time.

Youth with CTD Ages 13-17

Youth (13-17 years) will be recruited for a qualitative interview using the exploratory questionnaire developed for the study. Parent/caregivers will also be asked questions related to their child's CTD. Participants will be asked for feedback on the ease of completion, content, readability and completion time. After development of the TD Stigma scale, prior and new participants with CTD will be asked to complete the TD-Stigma scale with companion measures. Feedback on the scale will be elicited as well.

Adults with CTD Ages (18-30)

Adults with CTD (Ages 18-30) will be recruited for a qualitative interview using the exploratory questionnaire developed for the study. Participants will be asked for feedback on the ease of completion, content, readability and completion time. After development of the TD Stigma scale, prior and new participants with CTD will be asked to complete the TD-Stigma scale with companion measures. Feedback on the scale will be elicited as well.

Supporters: Partners/Spouses/Significant others

For Partners/Spouses/Significant others, qualitative interview administered will begin with the participant's experience and qualifications in caring for individuals with CTD and adapted to the supporter's perspective. Participants will be asked for feedback on the ease of completion, content, readability and completion time.

Eligibility Criteria

• Age: 8 Years+
• Sex: all
• Healthy Volunteers: No
• Age Groups: Child (0-17), Adult (18-64), Older Adult (65+)
• Sampling Method: Non-Probability Sample

Study Population

Youth and Young adults with CTD (Chronic Tic Disorder, Tourette) Supporters of individuals with CTD - parents or caregivers, partners Providers/advocates of individuals with CTD - clinicians, therapists, patient advocacy group representatives

You may qualify if:

• CTD Cohort
• Physician-confirmed diagnosis of CTD based on the Diagnostic and Statistical Manual for Mental Disorders-Fifth Edition (DSM-V) criteria
• years old.
• Parent/caregivers, supporters, medical providers, advocate cohort (s)
• Involved in the care of a child, youth or young adult with CTD
• The known person with CTD has had tics for more than a year at the time of screening

You may not qualify if:

• CTD Cohort
• Non-English speaking
• Diagnosis of intellectual disability
• Diagnosis of psychosis
• Any other condition that, in the Principle Investigator's opinion, would limit the participant's (or parent's) ability to understand study measures.
• Parent/caregivers, supporters, medical providers, advocate cohort (s)
• \) The known person with CTD has an intellectual disability or diagnosis of psychosis

Sponsors & Collaborators

• Wake Forest University Health Sciences: lead
• Tourette Association of America: collaborator
• University of Rochester: collaborator

Study Sites (1)

Wake Forest University Health Sciences

Winston-Salem, North Carolina, 27157, United States

Location

Related Publications (1)

• Martindale JM, Chapman L, Carson AJ, Reilly K, Malli M, Storch EA, Salsman J, Daniel S. Beyond the Tics: Experiences of Stigma and Psychosocial Impact in Tourette Syndrome. Child Psychiatry Hum Dev. 2026 Jan 24. doi: 10.1007/s10578-026-01965-0. Online ahead of print.

  PMID: 41579326 DERIVED

MeSH Terms

Conditions

Tourette Syndrome; Tic Disorders; Tics; Social Stigma

Condition Hierarchy (Ancestors)

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

Study Officials

• Jaclyn M Martindale, DO

  Wake Forest University Health Sciences

  PRINCIPAL INVESTIGATOR

Study Design

• Study Type: observational
• Observational Model: CASE ONLY
• Time Perspective: PROSPECTIVE
• Sponsor Type: OTHER
• Responsible Party: SPONSOR

Study Record Dates

• First Submitted: January 12, 2023
• First Posted: January 25, 2023
• Study Start: March 4, 2023
• Primary Completion: June 27, 2024
• Study Completion: June 27, 2024
• Last Updated: September 10, 2025

Record last verified: 2025-09

Data Sharing

• IPD Sharing: Will share
• Shared Documents: STUDY PROTOCOL
• Time Frame: Beginning 9 months and ending 36 months following article publication.
• Access Criteria: Investigators whose proposed use of the data has been approved by an independent re view committee ("learned intermediary") identified for this purpose. For individual participant data meta-analysis. Proposals should be directed to the study PI jmartind@wakehealth.edu

Locations

US (1)