Tourette Discrimination (TD) Stigma Scale

Wake Forest University Health Sciences43 enrolled

Overview

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.

Study Type

OBSERVATIONAL

Enrollment

Conditions

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

Eligibility

Sex: ALLMin age: 8 Years

Medical Language ↔ Plain English

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

Locations (1)

Wake Forest University Health Sciences

Winston-Salem, North Carolina, United States

Outcomes

Primary Outcomes

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.

Time frame: Month 7

Data from ClinicalTrials.gov

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