Hospice Care Experiences Among Decedents With Huntington's Disease

Abstract

Context: Little is known about the hospice care experiences of those with Huntington's Disease (HD).

Objectives: Our objective is to provide the first national characterization of hospice care quality for patients with HD and their families.

Methods: We used national Consumer Assessment of Healthcare Providers and Systems (CAHPS) Hospice Survey data to examine caregiver-reported experiences of hospice care. We analyzed data from 550 caregivers of patients with HD and 1,098,819 caregivers of patients without HD who died January 2016-June 2019 while receiving hospice care from 3,845 hospices nationwide. Outcomes (on a 0-100 scale) were eight publicly-reported quality of care measures, and four individual survey items about receiving help for specific symptoms. Analyses were propensity-score weighted and adjusted for patient and caregiver characteristics.

Results: Experiences of care among patients with HD were similar to or better than for patients without HD. Across all hospice and care settings, the only significant difference was for Providing Emotional, and Spiritual Support (90.9 [HD] vs. 88.2 [non-HD], a medium effect size, P < 0.01). However, patients with HD more often received care in settings with worse experiences for all patients; within the same hospice and same setting of care, measure scores were significantly higher for patients with HD compared to those without HD (2.3-4.6 points higher on a 0-100 scale) for all measures except Getting Hospice Care Training.

Conclusion: Our findings highlight the benefits of hospice care for those with HD and their families and may be useful for patients with HD when making decisions regarding options for end-of-life care.

Keywords: Huntington's disease; caregiver experience; hospice; patient experience; symptoms.