School of Population and Global Health, The University of Western Australia, 35 Stirling Highway, Perth, WA 6009 Australia; Faculty of Health and Medical Sciences, The University of Western Australia, 35 Stirling Highway, Perth, WA 6009 Australia.
School of Population and Global Health, The University of Western Australia, 35 Stirling Highway, Perth, WA 6009 Australia.
Int J Nurs Stud. 2020 Sep;109:103655. doi: 10.1016/j.ijnurstu.2020.103655. Epub 2020 Jun 1.
There is a growing emphasis on the importance of availability of specialist palliative care for people living with dementia. However, for people imminently dying with dementia, we still have little knowledge about their palliative care needs and utilization of different specialist services.
To (i) assess palliative care needs and other clinical and social characteristics of people imminently dying with dementia on their last admission in the context of community and inpatient palliative care services before death; (ii) compare care needs between patients requiring community-based and inpatient services; (iii) determine how and whether such care needs affect utilization of different palliative care services.
Observational study using data from the Australian Palliative Care Outcomes Collaboration.
Specialist palliative care services across Australia registered in the Palliative Care Outcomes Collaboration.
A total of 3361 people who required specialist palliative care principally for dementia (including Alzheimer's disease and other dementias), and whose death occurred between 1 January 2013 and 31 December 2018.
Five validated clinical instruments were used to collect point-of-care outcomes on each individual's function (Resource Utilisation Groups - Activities of Daily Living & Australia-modified Karnofsky Performance Status), symptom distress (Symptoms Assessment Scale & Palliative Care Problem Severity Score) and other clinical characteristics (Palliative Care Phases). We fitted multivariate logistic regression models to examine the association between these clinical outcomes and utilization of different specialist palliative care services.
The majority of people imminently dying with dementia had absent or mild levels of symptom distress but experienced high levels of functional decline and needed substantial assistance with basic tasks of daily living in their last days of life. Large disparities in symptoms distress and functional decline between inpatient and community groups were not observed although differences in assessment scores were often statistically significant. Poor functional outcomes (odds ratio = 1.77, 95% confidence interval: 1.24-2.52) and "non-stable" palliative care phases (odds ratio =24.51, 95% confidence interval: 12.03-49.96) were positively associated with use of inpatient versus community palliative care, whereas there was no clear association between the majority of symptoms and use of different care services.
The majority of people imminently dying with dementia could potentially benefit from greater access to supportive services in the community. Development of a dementia-specific palliative care pathway is needed to promote needs-based palliative care delivery models. TWEETABLE ABSTRACT: the majority of people imminently dying with dementia could potentially benefit from greater access to supportive services in community.
人们越来越重视为患有痴呆症的人提供专业姑息治疗服务的可及性。然而，对于即将死于痴呆症的人，我们对他们在临终前的姑息治疗需求以及对不同专业服务的利用情况知之甚少。
（i）评估在社区和住院姑息治疗服务背景下，即将死于痴呆症的人在最后一次入院时的姑息治疗需求和其他临床及社会特征；（ii）比较需要社区和住院服务的患者的护理需求；（iii）确定这些护理需求如何以及是否影响了不同姑息治疗服务的利用。
利用澳大利亚姑息治疗结局协作组织的数据进行的观察性研究。
澳大利亚姑息治疗结局协作组织注册的专业姑息治疗服务。
总共 3361 名主要因痴呆症（包括阿尔茨海默病和其他类型的痴呆症）而需要姑息治疗的人，他们的死亡发生在 2013 年 1 月 1 日至 2018 年 12 月 31 日之间。
使用五项经过验证的临床工具在每个个体的护理点上收集关于其功能（资源利用组-日常生活活动和澳大利亚改良卡诺夫斯基表现状态）、症状困扰（症状评估量表和姑息治疗问题严重程度评分）和其他临床特征（姑息治疗阶段）的结果。我们拟合了多变量逻辑回归模型，以研究这些临床结局与不同专业姑息治疗服务的利用之间的关联。
即将死于痴呆症的大多数人存在轻微或无明显的症状困扰，但在生命的最后几天经历了严重的功能下降，需要大量的基本日常生活活动的帮助。尽管评估分数往往存在统计学差异，但在住院和社区组之间并没有观察到症状困扰和功能下降的巨大差异。功能预后不良（比值比=1.77，95%置信区间：1.24-2.52）和“不稳定”的姑息治疗阶段（比值比=24.51，95%置信区间：12.03-49.96）与使用住院姑息治疗而非社区姑息治疗呈正相关，而大多数症状与使用不同的护理服务之间没有明确的关联。
即将死于痴呆症的大多数人可能会受益于更多地获得社区支持服务。需要制定专门针对痴呆症的姑息治疗途径，以促进基于需求的姑息治疗提供模式。
摘要 tweeted 版本：即将死于痴呆症的大多数人可能会受益于更多地获得社区支持服务。
