Amy C. Ogilvie PhD , Connie S. Cole PhD, DNP , Benzi M. Kluger MD , Hillary D. Lum MD, PhD
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Multivariate logistic regression models were used to identify sociodemographic factors associated with place of death.</div></div><div><h3>Results</h3><div>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%, <em>P</em> < .001). A greater proportion of deaths in rural areas occurred in LTC facilities compared with all other locations (<em>P</em> < .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.</div></div><div><h3>Conclusions and Implications</h3><div>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.</div></div>","PeriodicalId":17180,"journal":{"name":"Journal of the American Medical Directors Association","volume":"26 1","pages":"Article 105304"},"PeriodicalIF":4.2000,"publicationDate":"2024-10-11","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":"0","resultStr":"{\"title\":\"Exploring Place of Death among Individuals with Huntington's Disease in the United States\",\"authors\":\"Amy C. Ogilvie PhD , Connie S. Cole PhD, DNP , Benzi M. 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引用次数: 0
摘要
目的：描述亨廷顿氏病（HD）患者的死亡趋势并确定与死亡地点相关的因素：描述亨廷顿氏病（Huntington's disease，HD）患者的死亡趋势并确定与死亡地点相关的因素：设计：美国疾病控制和预防中心国家卫生统计中心对已故亨廷顿氏症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名HD患者：我们分析了死亡地点，分为长期护理（LTC）机构、家庭、医院、临终关怀机构和其他地点。使用线性回归模型评估了 2009 年至 2019 年死亡地点的变化趋势。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因素：从 2009 年到 2019 年，最大比例的死亡发生在长期护理机构（48.4%）。发生在 LTC 机构中的死亡比例呈明显下降趋势（53.5%-43.9%，P 结论和影响：尽管呈下降趋势，但长期护理机构仍然是支持 HD 患者的基石，尤其是在农村地区。这些结果提出了多种研究途径，以改善 HD 晚期患者获得护理的便利性和护理质量。未来的研究需要进一步了解农村地区和缺乏家庭支持对 HD 患者获得长期护理和临终关怀的可及性和质量的影响。这些研究结果还有助于为干预措施提供依据，干预措施的重点是在长期护理中心和安宁疗护机构内对员工进行培训和教育，以便更好地控制 HD 的病情发展和症状。
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.
期刊介绍：
JAMDA, the official journal of AMDA - The Society for Post-Acute and Long-Term Care Medicine, is a leading peer-reviewed publication that offers practical information and research geared towards healthcare professionals in the post-acute and long-term care fields. It is also a valuable resource for policy-makers, organizational leaders, educators, and advocates.
The journal provides essential information for various healthcare professionals such as medical directors, attending physicians, nurses, consultant pharmacists, geriatric psychiatrists, nurse practitioners, physician assistants, physical and occupational therapists, social workers, and others involved in providing, overseeing, and promoting quality
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