Tourette Discrimination (TD) Stigma Scale

Wake Forest University (WFU)

Status: Completed

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

Study type: Observational

Funder types: Other

Identifiers

NCT05696769

IRB00080472

Details and patient eligibility

About

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.

Full 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.

Enrollment: 43 patients

Sex: All

Ages: 8+ years old

Volunteers: No Healthy Volunteers

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

Exclusion criteria:

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

Trial design

43 participants in 6 patient groups

Youth with CTD Ages 8-12

Description:

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

Description:

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

Description:

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

Description:

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)

Description:

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

Description:

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.