For a study, researchers sought to deliver the first nationwide assessment of hospice care quality for Huntington’s Disease (HD) patients and their families.

They examined caregiver-reported hospice care experiences using data from the national Consumer Assessment of Healthcare Providers and Systems (CAHPS) Hospice Survey. They reviewed data from 550 carers of HD patients and 1,098,819 caregivers of non-HD patients who died between January 2016 and June 2019 while receiving hospice care from one of 3,845 hospices across the US. Eight publicly stated quality of care variables and four individual survey questions concerning obtaining assistance for particular symptoms were used to calculate outcomes (on a 0-100 scale). The analyses were weighted by propensity score and adjusted for patient and caregiver factors.

People with HD had similar or better treatment experiences than patients without HD. The sole significant difference across all hospice and care settings were in Providing Emotional and Spiritual Support (90.9 [HD] vs. 88.2 [non-HD], a medium effect size, P<0.01). Patients with HD, on the other hand, were more likely to receive care in settings where all patients had a worse experience; within the same hospice and 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.

The findings underscored the benefits of hospice care for persons with HD and their families, and they may be relevant for patients with HD when deciding on end-of-life care alternatives.