Clinical characteristics of indigenous North Americans with Huntington’s disease (HD) and associated suicidal ideation risk: An enroll-HD analysis

Introduction Although Huntington’s Disease is frequently described in White non-Hispanic communities, many Huntington’s Disease Society of America (HDSA) Centers of Excellence (COEs) in the United States care for racial and ethnic minority groups, and disease-specific outcomes are rarely evaluated in these populations. One important disease-specific outcome to assess in minoritized groups with HD is suicidal ideation, a leading cause of morbidity and mortality in patients with HD. Methods In this cross-sectional study, we used the longitudinal epidemiologic dataset, Enroll-HD, to evaluate the odds of reporting a history of suicidal ideation among North Americans with genetically confirmed HD. Results Our study found that although Indigenous North Americans represented a small number of Enroll-HD participants, they had 2.3 times the odds (AOR 2.3, CI 1.30–4.0) of reporting a history of suicidal ideation compared with White non-Hispanic participants after controlling for age, sex, CAG repeat length, disease staging, cognitive impairment, educational attainment, and participant geographic location. We then compared HD-specific clinical variables, such as total motor score and disease staging, across all racial and ethnic subgroups. Indigenous North Americans had similar clinical characteristics at the time of entering this natural history study, with 49% of participants in this group entering during early disease stages. Conversely, when comparing the sociodemographic characteristics of this cohort to other racial and ethnic subgroups, Indigenous North Americans with HD experienced greater socioeconomic disadvantage, as measured by lower educational attainment (p < 0.001), higher unemployment rates (p = 0.002), and greater residence in rural and non-urban geographic settings (p = 0.004). Discussion Our findings highlight the unique behavioral health needs of Indigenous North Americans with HD, which may be independent of disease-specific characteristics and instead driven by historical and contemporary social and structural determinants of health. These findings underscore the need for culturally appropriate interventions to address the behavioral health needs of Indigenous North Americans affected by HD and other neurological disorders.