Economic Burden of Long-Term Care (LTC) in Patients with Advanced Huntington's Disease (HD) and the Impact on Caregivers in North America: A Systematic Literature Review (SLR)

OBJECTIVES: HD is a rare neurodegenerative disorder currently without a cure or treatment to prevent or slow disease progression. Progressive cognitive, motor, and psychiatric impairments increase the care needs of individuals with HD, with increasing likelihood of placement into LTC as patients progress to an advanced stage. This study aimed to understand the LTC provision for advanced HD in North America, the costs associated with this care, and the impact on caregivers.

METHODS: An SLR was conducted March 28, 2023 in Embase to identify the economic burden associated with HD. Eligible studies were published from 2008 (2020 for conference proceedings) and presented data on healthcare resource utilization or direct/indirect costs. Citations were assessed by two reviewers, with discrepancies reconciled by a third. For this sub-analysis, data relating to LTC were single-extracted from studies in the US and Canada.

RESULTS: 238 citations were screened, 62 studies were included, and 8 reported data for LTC. Most patients with advanced HD receive care in a nursing home (35%) or at home (32%). Annual per-patient formal-care costs were $6,384-$20,455 for LTC/nursing home care, driven by an increasing need for care (>50% total Medicaid costs in one study) and higher hospitalization rates with increasing length of stay as HD progresses. Informal care in advanced HD is also substantial at ~41 hours/week. Informal care can begin earlier, provided for an average of 10.2 years. When caring for patients with advanced HD, 18% of caregivers chose an alternate career, 51% were unable to progress with their career, 70% were prevented from working more hours, and 54% reported work productivity loss.

CONCLUSIONS: The economic burden of care among patients with advanced HD is substantial, both for health systems and caregivers. There is significant unmet need for disease-modifying therapies that can reduce formal and informal care costs.