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Background: The Huntington’s Disease Society of America (HDSA) designates centers of excellence (COE) based on access to multidisciplinary care for Huntington’s Disease (HD). However, the sociodemographic composition, impact of social determinants of health, and clinical utility of these centers remain poorly characterized. 

Objective: We sought to describe the clinical and sociodemographic profile of patients at UCLA, an HDSA COE, and evaluate associations between insurance status, diagnostic delay, and HD-specific clinical outcomes.

Methods: We conducted an electronic health record review of 458 persons with HD seen at UCLA between 2012 and 2024. We evaluated sociodemographics, diagnostic timelines, and pharmacologic management. To investigate the impact of social determinants of health, we first defined time-to-diagnosis as age of diagnosis minus age at symptom onset. Delay to specialty care was defined as the interval from age diagnosed to age at first COE visit. Linear regressions evaluated associations between insurance payer and time-to-diagnosis, and delays to first COE visit. Sequential models adjusted for biological factors (sex, race, CAG length) and socioeconomic (SES) variables (neighborhood ADI). Logistic regressions evaluated associations between insurance and chorea medications, reported falls, suicidal ideation, and access to psychiatry and physical therapy. 

Results: Of 458 patients, 262 (57%) were female. For race and ethnicity, 61% identified as White Non-Hispanic, 26% Hispanic/Latino, 6% Black, and 3.5% Asian. At first COE visit, 29% had private insurance, 25% had Medicare, 16% had Medicaid, and 30% were self-paying. Mean time from symptom onset to diagnosis was 3.35 years (SD 7.19), with most patients (52%) reporting motor symptoms at time of disease onset. Nearly half of all patients received an HD diagnosis before presenting to UCLA (194, 51%). For disease management, 227 (55%) received antipsychotics, while 92 (20%) received VMAT2 inhibitors. Publicly insured patients had significantly longer diagnostic delays across all models (SES-adjusted β 3.98, CI 1.39–6.57). Insurance was not associated with delays in COE access. Publicly insured patients did show a higher likelihood of VMAT2 inhibitor and antipsychotic use (biologically adjusted RR 3.50, CI 1.11–11.04). This association lost significance once adjusted for SES. 

Conclusions:  This 12-year COE characterization reveals a racially and socioeconomically diverse HD population, with public insurance independently associated with prolonged diagnostic delay and differential treatment patterns. These findings underscore the need for multicenter COE benchmarking and highlight the impact of patient socioeconomics on HD care delivery.