2026 American Academy of Neurology Abstract Website

Objective:

To identify disparities in advance care planning (ACP) preferences and palliative care engagement between Hispanic and non-Hispanic individuals affected by Huntington’s disease (HD).

Background:

HD is a progressive, fatal neurodegenerative disorder characterized by cognitive, behavioral, and motor decline. ACP allows individuals to make decisions about future medical care, ensuring their preferences are respected. Because decisional capacity diminishes early in HD, timely ACP discussions are crucial. Prior studies suggest that under-represented populations face disparities in accessing ACP, and that palliative care remains underutilized in HD. No study has examined the attitudes towards ACP and palliative care among Hispanic patients and caregivers.

Design/Methods:

Using a cross-sectional study design, we administered an anonymous 37-item survey including demographic variables and the validated HDQLIFE End of Life Planning instrument to HD patients and caregivers from a diverse academic center in South Florida. Group differences were evaluated using Mann-Whitney U, Fisher’s exact tests, and multivariable linear regression.

Results:

54 responses were analyzed (28 patients [52%], 26 caregivers [48%]); 26 participants (48%) identified as Hispanic. Hispanic HD patients had significantly lower palliative care engagement (p<0.05) across 10 HDQLIFE items and lower overall composite scores. Adjusting for age, income, and education, Hispanic participants had an average total score 9.4 points lower (out of 55) than non-Hispanic participants. In adjusted regression, Hispanic ethnicity remained independently associated with reduced end-of-life planning (β = -0.82; 95% CI: -1.32, -0.31; p = 0.0021). Notably, all Hispanic patients and caregivers rated hospice and nursing home care, respectively, at the lowest score of 1, indicating they “haven’t thought about [these interventions],” suggesting cultural influences on care preferences.

Conclusions:

This first and largest study of its kind identifies substantially lower engagement in ACP and palliative care among Hispanic individuals affected by HD. These findings underscore the importance of developing culturally tailored interventions to enhance ACP participation within this population.