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

Marisela E Dy-Hollins; Samuel J Carr; Angela Essa; Lisa Osiecki; Daniel T Lackland; Jenifer H Voeks; Nicte I Mejia; Nutan Sharma; Cathy L Budman; Danielle C Cath; Marco A Grados; Robert A King; Gholson J Lyon; Guy A Rouleau; Paul Sandor; Harvey S Singer; Lori B Chibnik; Carol A Mathews; Jeremiah M Scharf

doi:10.1016/j.pediatrneurol.2024.02.008

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

Pediatr Neurol. 2024 Mar 1:155:55-61. doi: 10.1016/j.pediatrneurol.2024.02.008. Online ahead of print.

Authors

Marisela E Dy-Hollins¹, Samuel J Carr², Angela Essa², Lisa Osiecki², Daniel T Lackland³, Jenifer H Voeks³, Nicte I Mejia², Nutan Sharma², Cathy L Budman⁴, Danielle C Cath⁵, Marco A Grados⁶, Robert A King⁷, Gholson J Lyon⁸, Guy A Rouleau⁹, Paul Sandor¹⁰, Harvey S Singer¹¹, Lori B Chibnik¹², Carol A Mathews¹³, Jeremiah M Scharf²

Affiliations

¹ Department of Neurology, Massachusetts General Hospital, Harvard Medical School, Boston, Massachusetts. Electronic address: mdyhollins@mgb.org.
² Department of Neurology, Massachusetts General Hospital, Harvard Medical School, Boston, Massachusetts.
³ Department of Neurology, Medical University of South Carolina, Charleston, South Carolina.
⁴ Department of Psychiatry, Northwell, New York, New York.
⁵ Department of Psychiatry, University Medical Center Groningen, Rijks Universiteit Groningen, and Drenthe Mental Health Institute, Groningen, Netherlands.
⁶ Department of Psychiatry and Behavioral Sciences, Johns Hopkins University School of Medicine, Baltimore, Maryland.
⁷ Yale Child Study Center, Yale School of Medicine, New Haven, Connecticut.
⁸ George A. Jervis Clinic and Institute for Basic Research in Developmental Disabilities, Staten Island, New York.
⁹ Department of Neurology and Neurosurgery, Montreal Neurological Institute and Hospital, McGill University Health Center, Montreal, Canada.
¹⁰ Department of Psychiatry, University Health Network, University of Toronto, Toronto, Ontario, Canada.
¹¹ Departments of Pediatrics and Neurology, Johns Hopkins Hospital, Kennedy Krieger Institute, Baltimore, Maryland.
¹² Department of Neurology, Massachusetts General Hospital, Harvard Medical School, Boston, Massachusetts; Department of Epidemiology, Harvard T.H. Chan School of Public Health, Boston, Massachusetts.
¹³ Department of Psychiatry, Center for OCD, Anxiety and Related Disorders, University of Florida, Gainsville, Florida.

PMID: 38608551
DOI: 10.1016/j.pediatrneurol.2024.02.008

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.

Keywords: Disparities; Ethnicity; Race; Social determinants of health; Tourette Syndrome.