Measuring Stigmatization in Chronic Tic Disorders: Development and Validation of the Tourette Discrimination-Stigmatization (TD-STIGMA) Scale
Overview
- Phase
- Not Applicable
- Intervention
- Not specified
- Conditions
- Tourette Syndrome
- Sponsor
- Wake Forest University Health Sciences
- Enrollment
- 43
- Locations
- 1
- Primary Endpoint
- Change in Tourette Discrimination-Stigmatization (TD-STIGMA) scores
- Status
- Completed
- Last Updated
- 7 months ago
Overview
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.
Investigators
Eligibility Criteria
Inclusion Criteria
- •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
- •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
Outcomes
Primary Outcomes
Change in Tourette Discrimination-Stigmatization (TD-STIGMA) scores
Time Frame: Month 7
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.