Black and Hispanic Individuals with Tourette Syndrome are Under-Represented in Specialty Clinics (P11-11.016)

Abstract

<h3>Objective:</h3> To examine the racial and ethnic distribution of Tourette Syndrome (TS) individuals presenting for care in the Massachusetts General Brigham System (MGB). <h3>Background:</h3> 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. <h3>Design/Methods:</h3> 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. <h3>Results:</h3> All group comparisons were significant for race (p-values &lt;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%). <h3>Conclusions:</h3> 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. <b>Disclosure:</b> The institution of Dr. Dy-Hollins has received research support from CNCDP-K12. Lori B. Chibnik has nothing to disclose. Mr. Realbuto has nothing to disclose. Dr. Rao has received research support from National Institute for Health. Dr. Rao has received research support from National Institute for Drug Abuse. Dr. Sharma has received personal compensation in the range of $5,000-$9,999 for serving as an Editor, Associate Editor, or Editorial Advisory Board Member for Wiley. Dr. Sharma has received personal compensation in the range of $10,000-$49,999 for serving as an Editor, Associate Editor, or Editorial Advisory Board Member for Wiley. Dr. Sharma has received personal compensation in the range of $5,000-$9,999 for serving as an Expert Witness for Cambridge Expert Witness. The institution of Dr. Sharma has received research support from NIH. Elyse Park has received publishing royalties from a publication relating to health care. The institution of Carol Mathews has received research support from NIH. Carol Mathews has received publishing royalties from a publication relating to health care. The institution of Dr. Scharf has received research support from the TLC Foundation for Body-Focused Repetitive Behaviors. Dr. Scharf has received personal compensation in the range of $500-$4,999 for serving as a Speaker for a TAA/CDC Family Day Symposium with the Tourette Association of America. Dr. Scharf has a non-compensated relationship as a Scientific Advisory Board Member with the Tourette Association of America that is relevant to AAN interests or activities.