接受家庭护理计划的肌缩性侧面硬化症患者的临床变化
Sebastiano Mercadante1, Antonino Petronaci2, Alessandra Casuccio3
1Main regional center of pain relief and supportive/palliative care La Maddalena Cancer Center, Palermo, Italy; Regional Home care program, SAMOT, Palermo.
Journal of pain and symptom management
|January 23, 2026
概括
肌缩侧面硬化症 (ALS) 患者的家庭息护理显示功能下降,但增加了对通风支持的需求. 预先的护理计划是最小的,但该计划成功地使患者在家中留住,并减少了住院治疗.
科学领域:
- 神经学 神经学
- 抚慰性护理是一种缓解性护理.
- 老年病的医生 老年病的医生
背景情况:
- 关于在家治疗的肌缩性侧面硬化症 (ALS) 患者的数据有限.
- 基于家庭的息护理计划对于ALS患者的管理至关重要.
研究的目的:
- 描述意大利ALS患者在家庭息护理计划中的人口统计,症状进展,认知,医疗保健使用和预先护理计划 (ACP).
- 评估ALS患者在家治疗息治疗的有效性.
主要方法:
- 招募了34名需要家庭息护理的ALS患者,并随访了6个月.
- 收集的数据包括人口统计,功能状态 (卡诺夫斯基,ALS-FRS-R),认知功能 (ECAS),生命支持需求 (NIV,胃口) 和ACP状态.
- 症状负担 (ESAS) 是每两个月评估一次.
主要成果:
- 卡诺夫斯基评分和ALS-FRS-R显著下降,而ECAS在六个月内保持稳定.
- 非侵入性通风 (NIV) 的使用增加,有7人在家中死亡.
- 提前护理规划和遗嘱并不常见,但随着法律管理员的参与,ACP的使用增加了.
结论:
- 对ALS患者的家庭息护理导致功能逐渐下降,增加对通风支持的需求.
- 该计划成功地在家中支持患者,减少了住院和临终关怀的入院.
- 改善预先的护理计划对于接受家庭息护理的ALS患者至关重要.
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