1. The Challenge of Examining Social Determinants of Health in People Living With Tourette Syndrome.
- Author
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Dy-Hollins ME, Carr SJ, Essa A, Osiecki L, Lackland DT, Voeks JH, Mejia NI, Sharma N, Budman CL, Cath DC, Grados MA, King RA, Lyon GJ, Rouleau GA, Sandor P, Singer HS, Chibnik LB, Mathews CA, and Scharf JM
- Subjects
- Adolescent, Adult, Child, Child, Preschool, Female, Humans, Male, Young Adult, Educational Status, Ethnicity, Parents, United States, White, Racial Groups, Social Determinants of Health, 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 (TAAICG) 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 nonparametric 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 (versus 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., Conclusions: Our study was limited by the low number of nonwhite or Hispanic individuals in the cohort. Racial and ethnic minoritized 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 minoritized groups to participate in research studies., Competing Interests: Declaration of competing interest The authors declare the following financial interests/personal relationships which may be considered as potential competing interests: M.E.D.-H. has received research support from the Tourette Association of America and NIH K12NS098482. S.J.C., A.E., L.O., D.T.L., J.H.V., L.B.C., C.L.B., M.A.G., R.A.K., G.J.L., G.A.R., and P.S. report no disclosures relevant to the manuscript. N.I.M. 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. N.S. has received research support from NIH grants NIH P01NS087997 and R21NS118541. Dr. Sharma has received honoraria from John Wiley Publishing for serving as editor-in-chief for Brain and Behavior. D.C.C. 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. H.S.S. receives royalties from the 3(rd) edition of book, Movement Disorders in Childhood, Elsevier. C.A.M. 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. J.M.S. has received research support from NIH grants R01NS105746 and R01NS102371. Dr. Scharf is also an unpaid member of the Tourette Association of America Scientific Advisory Board., (Copyright © 2024 The Authors. Published by Elsevier Inc. All rights reserved.)
- Published
- 2024
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