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Abstract Details

Disparities in Palliative Care Attitudes Among Hispanic and Non-hispanic Huntington’s Disease Patients and Caregivers: A Cross-sectional Study
Movement Disorders
P10 - Poster Session 10 (8:00 AM-9:00 AM)
16-010

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).

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.

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.
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.

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.
Authors/Disclosures
Benjamin Coleman
PRESENTER 		The institution of Mr. Coleman has received research support from 好色先生.
Danielle S. Shpiner, MD An immediate family member of Dr. Shpiner has received personal compensation for serving as an employee of University of Miami. Dr. Shpiner has received personal compensation in the range of $0-$499 for serving as an officer or member of the Board of Directors for Mission MSA. The institution of Dr. Shpiner has received research support from American Parkinson's Disease Association. The institution of Dr. Shpiner has received research support from CurePSP. The institution of Dr. Shpiner has received research support from Parkinson's Foundation. Dr. Shpiner has a non-compensated relationship as a COE Medical Director with Parkinson's Foundation that is relevant to AAN interests or activities. Dr. Shpiner has a non-compensated relationship as a Fellowship Co-Director with Medtronic that is relevant to AAN interests or activities. Dr. Shpiner has a non-compensated relationship as a Fellowship Co-Director with Boston Scientific that is relevant to AAN interests or activities. Dr. Shpiner has a non-compensated relationship as a Fellowship Co-Director with Abbott that is relevant to AAN interests or activities. Dr. Shpiner has a non-compensated relationship as a Fellowship Co-Director with Abbvie that is relevant to AAN interests or activities. Dr. Shpiner has a non-compensated relationship as a Fellowship Co-Director with Ipsen that is relevant to AAN interests or activities. Dr. Shpiner has a non-compensated relationship as a Fellowship Co-Director with Amneal that is relevant to AAN interests or activities. Dr. Shpiner has a non-compensated relationship as a Fellowship Co-Director with Michael J. Fox Foundation that is relevant to AAN interests or activities. Dr. Shpiner has a non-compensated relationship as a CoC Medical Director with CurePSP that is relevant to AAN interests or activities. Dr. Shpiner has a non-compensated relationship as a COE Medical Director with Mission MSA that is relevant to AAN interests or activities. Dr. Shpiner has a non-compensated relationship as a Fellowship Co-Director with Merz that is relevant to AAN interests or activities.
Yashira Torres, MD Dr. Torres has nothing to disclose.
Farren Briggs, PhD (University of Miami Miller School of Medicine) The institution of Prof. Briggs has received research support from NIH.
Silvia Vargas Parra (University of Miami) Silvia Vargas Parra has nothing to disclose.
Lucila Hernandez (University of Miami) Lucila Hernandez has nothing to disclose.
Wilfredo Rodriguez Somoza, IMG,CCRP Dr. Rodriguez Somoza has nothing to disclose.
Henry P. Moore, MD (University of Miami - Miller School of Medicine) Dr. Moore has received personal compensation in the range of $0-$499 for serving as a Consultant for Abbvie. Dr. Moore has received personal compensation in the range of $5,000-$9,999 for serving on a Scientific Advisory or Data Safety Monitoring board for Ipsen Pharma. The institution of Dr. Moore has received research support from Sage Therapeutics. The institution of Dr. Moore has received research support from Bukwang Pharmaceutical. The institution of Dr. Moore has received research support from Neurocrine. The institution of Dr. Moore has received research support from CDHI Foundation. The institution of Dr. Moore has received research support from MODUS Outcomes LLC. The institution of Dr. Moore has received research support from University of Kansas Center for Research.