Black and Hispanic Individuals with Tourette Syndrome are Under-Represented in Specialty Clinics
Marisela Dy-Hollins1, Lori Chibnik5, Evan Realbuto2, Vinod Rao3, Nutan Sharma2, Elyse Park4, Carol Mathews6, Jeremiah Scharf2
1Massachusetts General Hospital, 2Neurology, 3Psychiatry and Medicine, 4Department of Psychiatry and Medicine, Massachusetts General Hospital, 5Departments of Epidemiology and Neurology, Harvard T.H. Chan School of Public Health and Massachusetts General Hospital, 6Department of Psychiatry and Center for OCD, Anxiety, and Related Disorders, University of Florida
Objective:
To examine the racial and ethnic distribution of Tourette Syndrome (TS) individuals presenting for care in the Massachusetts General Brigham System (MGB).
Background:
TS is thought to occur with similar frequencies across racial and ethnic groups. However, we observed a low representation of racial and ethnic minority TS individuals in our specialty clinic at the MGB Tourette Syndrome Center of Excellence (TS-COE). We hypothesized that Black and Hispanic TS individuals are under-represented in specialty clinics compared to white and Non-Hispanic individuals.
Design/Methods:
We extracted patient registry aggregate data for individuals ages 4-21 years who were seen in outpatient Pediatrics, Pediatric Neurology, and TS-COE clinics between 01/01/2015-11/17/2021 with a TS diagnosis (ICD-9:307.23; ICD-10:F95.2) and compared to all individuals seen for any type of outpatient clinical care within the MGB Healthcare System. Chi-square goodness-of-fit testing was performed to examine the racial and ethnic proportion of TS individuals seen in the specialty clinics and across MGB (reference group). Statistical significance was set at p=0.05 level for overall group comparisons and at p=0.0125 (race) and p=0.025 (ethnicity) for post-hoc testing.
Results:
All group comparisons were significant for race (p-values <0.05). For ethnicity, group comparisons were significant for MGB vs. Pediatrics (p=0.01) and MGB vs. TS-COE (p=0.03). The proportion of: 1) Black TS individuals was lower in all clinics than in MGB, 2) white TS individuals was higher in the TS-COE (89.6%) compared to MGB (74.6%), and 3) Hispanic TS individuals was higher in Pediatrics (9.3%), but lower in the TS-COE (2.6%) when compared to those within MGB (5.2%).
Conclusions:
A more marked disparity is seen with lower proportions for Black TS individuals than Hispanic TS individuals across the clinics and in the TS-COE. Our findings illustrate the need for further research to identify relevant multi-level barriers to care for Black and Hispanic TS individuals.