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Abstract Details

Disparities in Access and Outcomes for Hospitalized California Patients with Huntington’s Disease (HD)
Movement Disorders
P4 - Poster Session 4 (5:00 PM-6:00 PM)
5-019

To describe HD patient demographics and healthcare utilization based on HDSA COE status using the California Department of Health Care Access and Information (HCAI) datasets.
Huntington's Disease (HD) is a neurodegenerative condition with a US prevalence of 13-15 per 100,000. The Huntington’s Disease Society of America (HDSA) designates Center of Excellence (COE) status to clinics that offer specialized multidisciplinary HD care. Yet, quality of care based on COE status has not been rigorously studied.
We used HCAI emergency room and inpatient hospitalization data from 2005 to 2022 to identify HD patients. We then obtained aggregate-level descriptive data on sex, race, age, insurance payer, and discharge disposition. We categorized the data by hospital affiliation with one of the six HDSA COEs in California. We used chi-square tests to assess between-group differences based on hospital COE status.

Of 6,022 HD patients, only 5.5% received care at a COE-affiliated hospital. Most patients were White-Non-Hispanic (62.9%), followed by Hispanic/Latino (21.8%) and Black (7.1%). Most patients were 60 years or older (41.6%), and 1.1% were under 19. Medicare (50.4%) was the primary insurance payer, followed by Medicaid (24.5%).

Non-COE hospitals served a higher proportion of Black patients (7.24% vs. 4.5%; p=0.075) and elderly patients (42.1% vs. 32.7%; p<0.001). COE hospitals had more pediatric hospitalizations (2.7% vs. 1.02%; p<0.01.) and more discharges to psychiatric facilities (5.71% vs. 1.53%; p<0.001). A higher proportion of HD patients died at non-COE hospitals (3.11% vs. 2.1%; p<0.001).
We highlight differences in HD access and outcomes between COE and non-COE hospitals. Our data includes all-payer information on a diverse HD patient population in California (20% Latino and 7.1% Black). More studies using HCAI and outpatient claims data are needed to assess HD care quality based on COE status.
Authors/Disclosures
Lina Shammas, Student
PRESENTER 		Ms. Shammas has received personal compensation for serving as an employee of Arrowhead Pharmaceuticals. Ms. Shammas has received personal compensation for serving as an employee of Architect Therapeutics.
Amy Ogilvie, PhD Ms. Ogilvie has nothing to disclose.
mariann a. tobar Ms. tobar has nothing to disclose.
Karla Luna, GC Miss Luna has nothing to disclose.
Derrick N. Okine, BA Mr. Okine has nothing to disclose.
Adys Mendizabal, MD, MS (UCLA) Dr. Mendizabal has received personal compensation in the range of $5,000-$9,999 for serving on a Speakers Bureau for Clinical 好色先生 Alliance. Dr. Mendizabal has received research support from Huntington's Disease Society of America. Dr. Mendizabal has received personal compensation in the range of $5,000-$9,999 for serving as a Consultant with Huntington's Disease Society of America (HDSA).