Hospice Care Similar or Better for Patients With Huntington Disease

Patients with Huntington disease and their families had similar or better hospice care experiences than those without Huntington disease, according to findings published in the Journal of Pain and Symptom Management.

“This work provides the first national characterization of hospice care quality for patients with Huntington disease and their families,” wrote lead author Layla Parast, PhD, of the University of Texas at Austin, and coauthors.

The study investigated data from the Consumer Assessment of Healthcare Providers and Systems Hospice Survey completed by 550 caregivers of patients with Huntington disease and more than 1 million caregivers of patients without Huntington disease. Patients died between January 2016 and June 2019 while receiving hospice care from 3845 hospices in the United States. Researchers looked at outcomes for eight publicly-reported quality of care measures and four individual survey items about help for specific symptoms.

Across all hospice and care settings, the only significant care difference between the two group’s care experiences was in the area of "providing emotional and spiritual support." Researchers reported average scores of 90.9 with Huntington disease and 88.2 without Huntington disease.

Patients with Huntington disease more often received care in settings with worse experiences for all patients, according to the study. Yet within the same hospice and same setting of care, patients with Huntington disease had significantly higher scores compared with patients without Huntington disease. For all measures except "getting hospice care training," scores were between 2.3 points and 4.6 points higher on a 100-point scale for patients with Huntington disease.

“Our findings highlight the benefits of hospice care for those with Huntington disease and their families,” researchers concluded, “and may be useful for patients with Huntington disease when making decisions regarding options for end-of-life care.”

Reference:
Parast L, Haas A, Teno J, Elliott M, Griffin BA, Anhang Price R. Hospice care experiences among decedents with Huntington's Disease. J Pain Symptom Manag. Published online March 6, 2022. doi:10.1016/j.jpainsymman.2022.02.342