Door-To-Door Video-Enhanced Prevalence Study of Tourette Disorder Among African Americans

ABSTRACT

Tourette syndrome (TS) affects about 0.5% of the population worldwide, but only sparse and conflicting data exist on TS prevalence among minority samples. Here we used VISITTS (a survey preceded by a short video showing tic phenomenology) and community outreach to provide estimates of tic disorder prevalence in African Americans. Community health workers (CHWs) left flyers at households in a predominantly minority neighborhood and approached people at a community health fair. Of 606 such contacts, 222 individuals agreed to discuss the study. Of these, 70% enrolled, of whom 82% identified as Black and 64% female. The VISITTS was well received. Lifetime prevalence of TS or another chronic tic disorder (TS/CTD) was 3.2%, and 31% endorsed any lifetime simple tic. The number of enrolled Black participants is remarkable compared to earlier TS studies, allowing one of the first prevalence estimates in this population (TS 2.3%, TS/CTD 3.9%). Tic disorders were endorsed only by Black respondents, though the small White sample precluded statistical comparison. Women had higher rates than men of TS (M:F = 0:1) and of any lifetime simple tic (M:F = 0.85), differing significantly from the expected 4:1 ratio (p = .009 and p < .001, respectively). For TS/CTD the ratio was 1.2:1 (p > .15). We conclude that VISITTS is a feasible tic screening tool in a minority population, that CHW community outreach increases enrollment of Black participants, that TS/CTD is no less common in this population, and that tics were as common in female as in male respondents.

Acknowledgments

The authors acknowledge funding for this study by the Tourette Association of America research grant “Uncovering Disparities in TS Prevalence and Identification Between Caucasians and African-Americans.” The VISIT-TS was developed as a part of the TAA-funded research grant “Finding Tics in the Community without Putting a Doctor on Every Corner” (PI: Black; Co-PI: Striley). HealthStreet was partially funded by the Washington University Clinical and Translational Award (NCRR RR024992). A preprint version of this manuscript appears on the Open Science Framework (Striley et al., 2022).

Disclosure statement

No potential conflict of interest was reported by the author(s).

Notes

¹ This participant also endorsed “adjusting your clothes over and over,” which could be a complex motor tic, though without any simple motor tic or further interview, it probably is not. If it was, the diagnosis would be Tic Disorder Not Otherwise Specified by DSMIVTR criteria and no tic diagnosis by DSM5 criteria, since for either, TS requires “multiple” motor tics (see Black, 2020).

Additional information

Funding

The work was supported by the National Center for Research Resources [UL1RR024992]; Tourette Association of America [Uncovering Disparities in TS Prevalence and Identi].