Tourette Discrimination (TD) Stigma Scale

Study Overview
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Brief Summary
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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.

Detailed Description
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This study will utilize a phased approach, where (1) Narrative and thematic content data will be obtained through in-depth qualitative interviews of CTD stakeholders. (2) Based on these results, a novel scale will be developed through the Delphi Method with CTD stakeholders. (3) Preliminary analyses of the scale's psychometric properties.

Official Title
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Measuring Stigmatization in Chronic Tic Disorders: Development and Validation of the Tourette Discrimination-Stigmatization (TD-STIGMA) Scale

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

Participation Criteria
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Eligibility Criteria
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Inclusion Criteria: CTD Cohort Physician-confirmed diagnosis of CTD based on the Diagnostic and Statistical Manual for Mental Disorders-Fifth Edition (DSM-V) criteria 8-30 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 Exclusion Criteria: CTD Cohort Exclusion criteria: 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) 1) The known person with CTD has an intellectual disability or diagnosis of psychosis

Ages Eligible for Study
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Minimum Age: 8 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 |
| --- | --- |
| Youth with CTD Ages 8-12<br>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<br>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<br>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<br>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)<br>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<br>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. | |

What is the study measuring?
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Primary Outcome Measures

| Outcome Measure | Measure Description | Time Frame |
| --- | --- | --- |
| 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 | 

 Terms related to the study
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Keywords Provided by Centre Hospitalier Valida
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Stigma