Study protocol for measuring stigmatization in persistent tic disorders: development and validation of the Tourette...

Area of Science:

• Neurodevelopmental Disorders
• Psychiatric Epidemiology
• Health Psychology

Background:

• Persistent Tic Disorders (PTDs), including Tourette Syndrome, are associated with significant social stigma, leading to peer rejection, loneliness, and self-stigma.
• Childhood stigmatization can exacerbate tic severity and is linked to increased suicidal ideation and psychiatric symptoms.
• Effective interventions are needed to mitigate the health impacts of stigma in PTDs, necessitating a reliable measurement tool.

Purpose of the Study:

• To develop and validate the Tourette Discrimination-Stigmatization (TD-STIGMA) Scale.
• To create a personalized approach for measuring stigma in youth and young adults with PTDs.
• To provide a foundation for cost-effective interventions aimed at reducing the downstream health consequences of stigma.

Main Methods:

• A mixed-methods approach combining qualitative interviews with stakeholders and quantitative scale development.
• Utilizing the Delphi Method for the creation of the TD-STIGMA self-report scale.
• Employing confirmatory factor analysis, convergent, known-group, criterion validity, and test-retest reliability analyses to evaluate psychometric properties.

Main Results:

• The study protocol outlines a phased approach to develop and validate the TD-STIGMA scale.
• Anticipated results include a psychometrically sound scale for measuring discrimination and stigmatization in PTDs.
• The scale aims to offer a personalized measurement approach for youth and young adults.

Conclusions:

• The development of the TD-STIGMA Scale is crucial for addressing the under-measured impact of stigma on individuals with PTDs.
• This validated scale will facilitate the creation of targeted interventions to reduce stigma and improve health outcomes.
• The study acknowledges limitations, including potential impacts of comorbidities and cultural factors, while striving for diverse and inclusive sampling.