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

Abstract

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.

Note:
IRB number: The IRB number approval for this study is Protocol # 2019P000678.

Study Funding: This study was funded by the Tourette Association of America and NINDS, NIH K12NS098482, R01 NS102371, and R01 NS105746. The content is solely the responsibility of the authors and does not necessarily represent the official views of the National Institutes of Health.

Competing interests: Authors with no conflicts SJC, AE, LO, DTL, JHV, LBC, CLB, MAG, RAK, GL, GAR, PS. MEDH has received research support from the Tourette Association of America and NIH K12NS098482. NIM -receives funding for projects she leads: Massachusetts General Brigham receives funding from the following non-profit entities Biogen Foundation, Massachusetts Life Sciences Center, and Muscular Dystrophy Association. NS has received research support from NIH grants NIH P01 NS087997 and R21 NS118541. Dr. Sharma has received honoraria from John Wiley Publishing for serving as editor-in-chief for Brain and Behavior. DCC has no financial disclosures. She has been an unpaid member of the steering committee of the European Society for the Study of Tourette Syndrome (ESSTS), and is a member of the Dutch TS advisory board. HSS receives royalties from the 3rd edition of book, Movement Disorders in Childhood, Elsevier. CAM has received research support from NIH grants R01NS105746 and R01NS102371. She is an unpaid member of the International OCD Foundation Scientific and Clinical Advisory Board and the Family Foundation for OCD Research Advisory Board.

Keywords: Tourette syndrome, Disparities, race, ethnicity, social determinants of health, health services research, tic disorders