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

Abstract

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.