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| Name | Class |
|---|---|
| Tourette Association of America | OTHER |
| University of Rochester | OTHER |
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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.
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.
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| Label | Type | Description | Intervention Names |
|---|---|---|---|
| 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. |
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| 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 |
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| Measure | Description | Time Frame |
|---|---|---|
| Qualitative Interviews | Stakeholder interviews will be audio-recorded, transcribed, and input into NVivo software for qualitative analysis. Transcripts will be compared with original recordings to ensure accuracy. Interviews will be analyzed using deductive thematic content analysis practices to identify emerging themes and subthemes. | 3 hours |
Inclusion Criteria:
CTD Cohort
Parent/caregivers, supporters, medical providers, advocate cohort (s)
Exclusion Criteria:
CTD Cohort
Exclusion criteria:
Parent/caregivers, supporters, medical providers, advocate cohort (s)
1) The known person with CTD has an intellectual disability or diagnosis of psychosis
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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
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| Name | Affiliation | Role |
|---|---|---|
| Jaclyn M Martindale, DO | Wake Forest University Health Sciences | Principal Investigator |
| Facility | Status | City | State | ZIP | Country | Contacts |
|---|---|---|---|---|---|---|
| Wake Forest University Health Sciences | Winston-Salem | North Carolina | 27157 | United States |
| PubMed Identifier | Type | Citation | Retractions |
|---|---|---|---|
| 41579326 | Derived | 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. |
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Individual participant data that underlie the results reported in this article, after deidentified
Beginning 9 months and ending 36 months following article publication.
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
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| ID | Term |
|---|---|
| D005879 | Tourette Syndrome |
| D013981 | Tic Disorders |
| D020323 | Tics |
| D057545 | Social Stigma |
| ID | Term |
|---|---|
| D001480 | Basal Ganglia Diseases |
| D001927 | Brain Diseases |
| D002493 | Central Nervous System Diseases |
| D009422 | Nervous System Diseases |
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| 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. |
| Tourette Discrimination-Stigmatization (TD-STIGMA) Scale psychometric properties |
A de-identified summary document of thematic content and narrative content analysis from Aim 1 will be securely emailed to stakeholders. Content will be alphabetized to avoid introducing bias. Stakeholders will be blind-copied to maintain anonymity. Using the Delphi Method, they will be asked to prioritize responses, provide feedback and propose solutions. The feedback process will continue until there is an 80% consensus among stakeholders. The outcome will be a close-ended TD-STIGMA scale. The Flesch Reading Ease score and Flesch-Kincaid Grade level will be used to assess questionnaire readability. |
| Month 4 |
| D009069 | Movement Disorders |
| D020271 | Heredodegenerative Disorders, Nervous System |
| D019636 | Neurodegenerative Diseases |
| D030342 | Genetic Diseases, Inborn |
| D009358 | Congenital, Hereditary, and Neonatal Diseases and Abnormalities |
| D065886 | Neurodevelopmental Disorders |
| D001523 | Mental Disorders |
| D020820 | Dyskinesias |
| D009461 | Neurologic Manifestations |
| D012816 | Signs and Symptoms |
| D013568 | Pathological Conditions, Signs and Symptoms |
| D012919 | Social Behavior |
| D001519 | Behavior |