Exploring Place of Death among Individuals with Huntington's Disease in the United States.

OBJECTIVES

To describe trends and identify factors associated with place of death among individuals with Huntington's disease (HD).

DESIGN

Retrospective cohort of deceased individuals with HD from the Centers for Disease Control and Prevention's National Center for Health Statistics.

SETTING AND

PARTICIPANTS

A total of 13,350 individuals with HD who died in the United States between 2009 and 2019.

METHODS

We analyzed place of death, categorized as long-term care (LTC) facility, home, hospital, hospice facility, and other locations. Trends in the places of death from 2009 to 2019 were assessed using linear regression models. Multivariate logistic regression models were used to identify sociodemographic factors associated with place of death.

RESULTS

From 2009 to 2019, the greatest proportion of deaths occurred in LTC facilities (48.4%). There was a significantly decreasing trend in the proportion of deaths occurring in LTC facilities (53.5%-43.9%, P < .001). A greater proportion of deaths in rural areas occurred in LTC facilities compared with all other locations (P < .001 for all comparisons). In the multivariate model, aged younger than 44 years, Black race, Hispanic ethnicity, some college education or greater, and being married were associated with significantly lower odds of dying in a LTC facility compared with home.

CONCLUSIONS AND IMPLICATIONS: Despite a decreasing trend, LTC facilities remain a cornerstone of support for individuals with HD, particularly in rural areas. These results suggest multiple avenues for research to improve accessibility and quality of care for individuals with late stages of HD. Future studies are needed to further understand the impact of rurality and lack of support in the home on the accessibility and quality of LTC and hospice care for individuals with HD. These results may also help inform interventions focused on training and staff education within LTC and hospice facilities to better manage HD progression and symptoms.