Measuring Stigmatization in Chronic Tic Disorders: Development and Validation of the Tourette Discrimination-Stigmatization (TD-STIGMA) Scale
试验速览
- 阶段
- 不适用
- 状态
- 已完成
- 入组人数
- 43
- 试验地点
- 1
- 主要终点
- Change in Tourette Discrimination-Stigmatization (TD-STIGMA) scores
研究概览
简要总结
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.
详细描述
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.
研究设计
- 研究类型
- Observational
- 观察模型
- Case Only
- 时间视角
- Prospective
入排标准
- 年龄范围
- 8 Years 至 —（Child, Adult, Older Adult）
- 性别
- All
- 接受健康志愿者
- 否
入选标准
- •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
排除标准
- •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
结局指标
主要结局
Change in Tourette Discrimination-Stigmatization (TD-STIGMA) scores
时间窗: 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.
次要结局
未报告次要终点