背景:对运动神经元病(MND)患者提供专科姑息治疗的重要性日益受到重视。然而,这些人群的姑息治疗需求和不同专科服务的利用仍不明确。
目的:为了(1)描述临床特征,MND患者在接受姑息治疗服务时的症状负担和功能水平;(2)确定与接受住院或社区姑息治疗服务相关的因素。
方法:一项观察性研究,基于澳大利亚姑息治疗结果合作组织的护理点评估数据。
方法:在2013年1月1日至2020年12月31日期间,共有1308名主要因MND而接受姑息治疗的患者。
方法:使用五种经过验证的临床仪器来评估每个人的功能,来自症状的困扰,症状的严重程度、紧迫性和病情的敏锐度。
结果:大多数MND患者没有或有轻度症状困扰,但经历了高度的功能损害。相对于“独立”的患者(OR=11.53,95%CI:4.87至27.26)和相对于“稳定”的“不稳定”的患者,需要“两名助手进行全面护理”的患者姑息治疗阶段(OR=16.74,95%CI:7.73至36.24)与基于社区的姑息治疗相比,更有可能使用住院护理。在这项研究中,未观察到使用不同姑息治疗服务与症状困扰水平之间的关联。
结论:MND患者更有可能因功能和日常生活活动能力下降而需要帮助,而不是症状管理。如果在这种情况下可以获得更多的支持服务,则该人群可能在社区环境的姑息阶段得到照顾。
BACKGROUND: There is a growing emphasis on the importance of the availability of specialist palliative care for people with motor neuron disease (MND). However, the palliative care needs of this population and the utilisation of different specialist services remain poorly defined.
OBJECTIVE: To (1) describe clinical characteristics, symptom burden and functional levels of patients dying with MND on their admission to palliative care services; (2) determine factors associated with receiving inpatient or community palliative care services.
METHODS: An observational study based on point-of-care assessment data from the Australian Palliative Care Outcomes Collaboration.
METHODS: A total of 1308 patients who received palliative care principally because of MND between 1 January 2013 and 31 December 2020.
METHODS: Five validated clinical instruments were used to assess each individual\'s function, distress from symptoms, symptom severity and urgency and acuity of their condition.
RESULTS: Most patients with MND had no or mild symptom distress, but experienced a high degree of functional impairment. Patients who required \'two assistants for full care\' relative to those who were \'independent\' (OR=11.53, 95% CI: 4.87 to 27.26) and those in \'unstable\' relative to \'stable\' palliative care phases (OR=16.74, 95% CI: 7.73 to 36.24) were more likely to use inpatient versus community-based palliative care. Associations between the use of different palliative care services and levels of symptom distress were not observed in this study.
CONCLUSIONS: Patients with MND were more likely to need assistance for decreased function and activities of daily living, rather than symptom management. This population could have potentially been cared for in the palliative phase in a community setting if greater access to supportive services were available in this context.