Health Care Utilization in the Last Year of Life in Parkinson Disease and Other Neurodegenerative Movement Disorders

Background and objectives: Neurodegenerative movement disorders are rising in prevalence and are associated with high healthcare utilization. Generally, healthcare resources are disproportionately expended in the last year of life. Healthcare utilization by those with neurodegenerative movement disorders in the last year of life is not well-understood.

The goal of this study was to assess the utilization of acute care in the last year of life among individuals with neurodegenerative movement disorders and determine whether outpatient neurology or palliative care impacted acute care utilization and place of death.

Methods: Retrospective cross-sectional study including health system administrative Alberta, Canada (2011 to 2017). Administrative data were used to determine place of death and quantify emergency department (ED) visits, hospitalizations, intensive care unit (ICU) admissions, and outpatient generalist and specialist visits. Diagnoses were classified by ICD-10 codes. Stata 16v was used for statistical analyses.

Results: Among 1439 (60% male) individuals, Parkinson’s disease (n=1226), progressive supranuclear palsy (n=78), multiple system atrophy (n=47) and Huntington’s disease (n=58) were the most common diagnoses. The most frequent place of death was in the hospital (45.9%), followed by long-term care (36.3%), home (7.9%) and residential hospice (4.0%). Most (64.2%) had >1 emergency department visit and 14.4% had >3 emergency department visits. Fifty-five percent had >1 hospitalization, and 23.3% spent >30 days in hospital. Few (2.6%) were admitted to intensive care unit. Only 37.2% and 8.8% accessed outpatient neurologist and specialist palliative care services, respectively. Multivariate logistic regression found the odds of dying at home was higher for those who received outpatient palliative consultation (odds ratio, 2.49, 95% confidence interval, 1.48-4.21, p<0.001) and with a longer duration of home care support (odds ratio, 1.0007, 95% confidence interval, 1.0004-1.0009, p<0.001).

Discussion: There are high rates of in-hospital death and acute care utilization in the year prior to death among those with neurodegenerative movement disorders. Most did not access specialist palliative or neurologic care in the last year of life. Outpatient palliative care and home care services were associated with increased odds of dying at home. Our results indicate the need for further research into the causes, costs, and potential modifiers to inform public health planning.