Ogilvie Amy C, Cole Connie S, Kluger Benzi M, Lum Hillary D
Division of General Internal Medicine, Department of Medicine, University of Colorado Anschutz Medical Campus, Aurora, CO, USA.
Division of General Internal Medicine, Department of Medicine, University of Colorado Anschutz Medical Campus, Aurora, CO, USA.
J Am Med Dir Assoc. 2025 Jan;26(1):105304. doi: 10.1016/j.jamda.2024.105304. Epub 2024 Oct 11.
To describe trends and identify factors associated with place of death among individuals with Huntington's disease (HD).
Retrospective cohort of deceased individuals with HD from the Centers for Disease Control and Prevention's National Center for Health Statistics.
A total of 13,350 individuals with HD who died in the United States between 2009 and 2019.
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.
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.
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.
描述亨廷顿舞蹈症（HD）患者的死亡地点趋势，并确定与之相关的因素。
对疾病控制与预防中心国家卫生统计中心已故HD患者进行回顾性队列研究。
2009年至2019年期间在美国死亡的13350例HD患者。
我们分析了死亡地点，分为长期护理（LTC）机构、家中、医院、临终关怀机构和其他地点。使用线性回归模型评估2009年至2019年期间死亡地点的趋势。多变量逻辑回归模型用于确定与死亡地点相关的社会人口学因素。
2009年至2019年，最大比例的死亡发生在LTC机构（48.4%）。LTC机构的死亡比例呈显著下降趋势（53.5% - 43.9%，P <.001）。与所有其他地点相比，农村地区在LTC机构死亡的比例更高（所有比较P <.001）。在多变量模型中，与在家中相比，年龄小于44岁、黑人种族、西班牙裔、有大专及以上学历以及已婚与在LTC机构死亡的几率显著降低相关。
尽管呈下降趋势，但LTC机构仍然是HD患者支持体系的基石，尤其是在农村地区。这些结果为改善HD晚期患者的医疗可及性和护理质量的研究提供了多条途径。未来需要进一步研究以了解农村地区以及家庭缺乏支持对HD患者获得LTC和临终关怀服务的可及性和质量的影响。这些结果也可能有助于为LTC和临终关怀机构内专注于培训和员工教育的干预措施提供参考，以更好地管理HD的进展和症状。
