Demographics and Healthcare Utilization Among Individuals with Huntington’s Disease With and Without Dementia Who Receive Healthcare in a Safety Net Health System in the US
Elizabeth Joe1, Adys Mendizabal2
1Neurology, University of Southern California, Keck School of Medicine, 2UCLA
Objective:
To describe the demographic characteristics and healthcare utilization among individuals with Huntington’s Disease (HD) with and without dementia who receive healthcare in a large safety net health system.
Background:
Cognitive impairment is a leading cause of disability in patients with HD. Specialty multidisciplinary HD care is provided at Huntington’s Disease Society of America (HDSA) Centers of Excellence (COE), yet only 10% of HD patients receive care at a COE. Furthermore, HD disease onset and disability often occur in mid-life, and patients may experience limited insurance coverage as they wait to become Medicare-eligible. These patients may receive care at safety net health systems, yet little is known about HD care and outcomes in these settings.
Design/Methods:
ICD-10 codes for HD and dementia were used to identify adults 18 and older evaluated at a large safety net health system from 2016-2023. Demographic characteristics and healthcare utilization were compared for individuals with and without dementia, using t-tests for continuous variables and chi-squared test for categorical variables.
Results:
183 individuals with HD had at least one visit to the health system. The mean age was 51.7 years, and 44% were female; 63% identified as Hispanic, 12% Black, 4% Asian, and 15% non-Hispanic white. 36 (20%) had a diagnosis of dementia. There was no difference in mean age, gender, race/ethnicity, preferred language, or overall level of medical comorbidity between individuals with and without diagnosed dementia. Compared to those without a dementia diagnosis, individuals with HD dementia had more hospital admissions than those without (1.55 vs 0.62, p < 0.001).
Conclusions:
The overall prevalence of diagnosed dementia in individuals with HD was low, but was associated with a higher number of hospitalizations than those without a dementia diagnosis in the electronic health record (EHR). Additional studies are needed to determine the validity of HD and dementia diagnoses in this setting.
Disclaimer: Abstracts were not reviewed by Neurology® and do not reflect the views of Neurology® editors or staff.