Tourette Discrimination (TD) Stigma Scale

NCT ID: NCT05696769

Last Updated: 2025-09-10

Basic Information

• Recruitment Status: COMPLETED
• Total Enrollment: 43 participants
• Study Classification: OBSERVATIONAL
• Study Start Date: 2023-03-04
• Study Completion Date: 2024-06-27

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.

Detailed Description

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.

Conditions

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

Study Design

• Observational Model Type: CASE_ONLY
• Study Time Perspective: PROSPECTIVE

Study Groups

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.

No interventions assigned to this group

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.

No interventions assigned to this group

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.

No interventions assigned to this group

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.

No interventions assigned to this group

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.

No interventions assigned to this group

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.

No interventions assigned to this group

Eligibility Criteria

Inclusion Criteria

CTD Cohort

1. Physician-confirmed diagnosis of CTD based on the Diagnostic and Statistical Manual for Mental Disorders-Fifth Edition (DSM-V) criteria

2. 8-30 years old.

Parent/caregivers, supporters, medical providers, advocate cohort (s)

1. Involved in the care of a child, youth or young adult with CTD

2. The known person with CTD has had tics for more than a year at the time of screening

Exclusion Criteria

CTD Cohort

1. Non-English speaking

2. Diagnosis of intellectual disability

3. Diagnosis of psychosis

4. 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

• Minimum Eligible Age: 8 Years
• Eligible Sex: ALL
• Accepts Healthy Volunteers: No

Sponsors

Tourette Association of America

OTHER

Sponsor Role: collaborator

University of Rochester

OTHER

Sponsor Role: collaborator

Wake Forest University Health Sciences

OTHER

Sponsor Role: lead

Responsible Party

Responsibility Role: SPONSOR

Principal Investigators

Jaclyn M Martindale, DO

Role: PRINCIPAL_INVESTIGATOR

Wake Forest University Health Sciences

Locations

Wake Forest University Health Sciences

Winston-Salem, North Carolina, United States

Countries

United States

Other Identifiers

IRB00080472

Identifier Type: -

Identifier Source: org_study_id