The Challenge of Examining Social Determinants of Health in People Living with Tourette Syndrome

Background To examine the association between race, ethnicity, and parental educational attainment on tic-related outcomes among Tourette Syndrome (TS) participants in the Tourette Association of America International Consortium for Genetics database. Methods 723 participants in the TAAICG dataset aged ≤ 21 years were included. The relationships between tic-related outcomes and race and ethnicity were examined using linear and logistic regressions. Parametric and non-parametric tests were performed to examine the association between parental educational attainment and tic-related outcomes. Results Race and ethnicity were collapsed as Non-Hispanic white (N=566, 88.0%) versus Other (N=77, 12.0%). Tic symptom onset was earlier by 1.1 years (p<0.0001) and TS diagnosis age was earlier by 0.9 years (p=0.0045) in the Other group (vs. Non-Hispanic white). Sex and parental education as covariates did not contribute to the differences observed in TS diagnosis age. There were no significant group differences observed across the tic-related outcomes in parental education variable. Discussion Our study was limited by the low number of non-white or Hispanic individuals in the cohort. Racial and ethnic minority groups experienced an earlier age of TS diagnosis than Non-Hispanic white individuals. Tic severity did not differ between the two groups, and parental educational attainment did not affect tic-related outcomes. There remain significant disparities and gaps in knowledge regarding TS and associated comorbid conditions. Our study suggests the need for more proactive steps to engage individuals with tic disorders from all racial and ethnic minority groups to participate in research studies.