在肌缩侧面硬化症的预先指令 - 一个系统的审查和元分析
Anne Lisa Mangal1, Martin Mücke2, Roman Rolke1
1Department of Palliative Medicine, Medical Faculty, RWTH Aachen University, Pauwelsstraße 30, Aachen, 52074, Germany.
BMC palliative care
|July 29, 2024
概括
预先护理规划 (ACP) 和预先指令 (AD) 对肌缩侧面硬化症 (ALS) 患者至关重要. 这次审查发现,随着时间的推移,AD使用量正在下降,并强调需要更好地将ACP纳入患者护理.
科学领域:
- 神经学 神经学
- 抚慰性护理是一种缓解性护理.
- 医疗保健服务研究 医疗服务研究
背景情况:
- 肌缩侧面硬化症 (ALS) 是一种进展性神经退行性疾病,影响运动神经元,导致严重的功能衰退和寿命缩短.
- 由于ALS的快速进展,需要全面的预先护理计划 (ACP),以解决,消化不良和通信丧失等关键需求.
- 预先指令 (AD) 和国际比较和在ALS中ACP应用对于改善患者护理和支持至关重要.
研究的目的:
- 进行系统性审查和元分析,比较预先指示 (AD) 和预先护理计划 (ACP) 在肌缩侧硬化症 (ALS) 的国际应用.
- 确定患者对ACP的偏好,确定研究缺口,并通过ACP制定改善患者护理的建议.
- 分析随着时间的推移和不同国家的AD使用和内容的趋势.
主要方法:
- 1999年至2024年间发表的定性和定量研究的系统文献综述和元分析,利用五个主要的电子数据库.
- 应用了包含标准来选择相关的初级文献,并系统地提取了关于预先指示 (AD) 数量和内容的数据.
- 进行了统计分析和元分析,以评估AD使用的国际差异和时间变化,并使用混合方法评估工具 (MMAT) 评估研究质量.
主要成果:
- 在998个被选的记录中,包括了26项研究,显示1999年至2024年出版物增加了88.9%.
- 在60.4%的患者 (1,629/2,696) 中记录了预先指示 (AD),但其使用率从78% (1999-2011) 显著下降到42% (2012-2024).
- 观察到关于AD含量的异质结果和显著的国际差异,定性和混合方法研究表明质量优越.
结论:
- 进一步的研究应侧重于对ALS的通风和人工营养的详细偏好,特别是在全球南方国家.
- 预先护理计划 (ACP) 必须是ALS患者个性化支持计划的组成部分,包括讨论首选死亡地点.
- 建议优先使用特定疾病的预先指示文件,以改善ALS患者的护理计划.
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