Objective: Describe HD patient demographics and healthcare utilization based on Huntington’s Disease Society of America (HDSA) Center of Excellence (COE) status using the California (CA) Department of Health Care Access and Information (HCAI) datasets, and electronic health record (EHR) data from the University of California Data Warehouse (UCDW).

Background: Huntington’s Disease (HD) has a US prevalence of 13-15 per 100,000. HDSA designates COE status to clinics that offer specialized multidisciplinary HD care. Yet, healthcare utilization patterns based on COE status has not been rigorously studied. ENROLL-HD, the most commonly used HD epidemiologic dataset, reports only 10.5% of participants identify as non-White, yet individual COE centers report higher patient diversity.

Method: We used HCAI hospitalization data from 2005 to 2022 to identify HD patients and obtain data on sex, race, age, insurance payer, and discharge disposition. We categorized the data by hospital affiliation with one of 6 COEs in CA. We used chi-square tests to assess between-group differences based on COE status. We also queried the UCDW to identify the total of HD patients seen for outpatient and inpatient care in five of the six HDSA COEs in CA through December 2024.

Results: In the HCAI dataset, 6,022 HD patients were identified. Only 5.5% received care at a COE-affiliated hospital. Most patients were White Non-Hispanic (62.9%), followed by Hispanic (21.8%) and Black (7.1%). Most patients were 60 years or older (41.6%). Medicare (50.4%) was the primary insurance payer, followed by Medicaid (24.5%). A query of the UCDW identified 1557 HD patients, 14.8% were Hispanic with a majority (35%) of Hispanic patients evaluated at UCLA. 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 discharges to psychiatric facilities (5.71% vs. 1.53%; p<0.001). Though there was a significantly higher proportion of deaths at non-COE, conclusions are limited due to the small sample.

Conclusion: Our data highlights a diverse HD patient population in CA overall as well as in five COEs in the state. In the UC health system alone, there were 1.7 times as many Hispanic patients evaluated compared to those participating in ENROLL-HD across North America. More studies using HCAI and outpatient claims data are needed to assess HD care access and quality based on COE status.

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MDS Abstracts - https://www.mdsabstracts.org/abstract/huntingtons-disease-care-and-patient-diversity-in-california-united-states/