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Neuropalliative care: Priorities to move the field forward.神经舒缓照护:推动该领域发展的优先事项。
Neurology. 2018 Jul 31;91(5):217-226. doi: 10.1212/WNL.0000000000005916. Epub 2018 Jun 27.
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Family Caregivers' Preparations for Death: A Qualitative Analysis.家庭成员对临终准备的看法:一项定性分析。
J Pain Symptom Manage. 2018 Jun;55(6):1473-1479. doi: 10.1016/j.jpainsymman.2018.02.018. Epub 2018 Feb 27.
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Palliative care triggers in progressive neurodegenerative conditions: An evaluation using a multi-centre retrospective case record review and principal component analysis.进行性神经退行性疾病中的姑息治疗触发因素:使用多中心回顾性病例记录评估和主成分分析。
Palliat Med. 2018 Apr;32(4):716-725. doi: 10.1177/0269216318755884. Epub 2018 Feb 5.
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Discussing edaravone with the ALS patient: an ethical framework from a U.S. perspective.与肌萎缩侧索硬化症患者讨论依达拉奉:从美国视角看伦理框架
Amyotroph Lateral Scler Frontotemporal Degener. 2018 May;19(3-4):167-172. doi: 10.1080/21678421.2018.1425455. Epub 2018 Jan 15.
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Measuring reliable change in cognition using the Edinburgh Cognitive and Behavioural ALS Screen (ECAS).使用爱丁堡认知与行为性肌萎缩侧索硬化症筛查量表(ECAS)测量认知功能的可靠变化。
Amyotroph Lateral Scler Frontotemporal Degener. 2018 Feb;19(1-2):65-73. doi: 10.1080/21678421.2017.1407794. Epub 2017 Dec 7.
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A randomized controlled trial of resistance and endurance exercise in amyotrophic lateral sclerosis.肌萎缩侧索硬化症中抗阻运动与耐力运动的随机对照试验
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Factor analysis of the Zarit Burden Interview in family caregivers of patients with amyotrophic lateral sclerosis.肌萎缩侧索硬化症患者家庭照顾者中 Zarit 负担访谈的因素分析
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End-of-life Characteristics and Palliative Care Provision for Patients With Motor Neuron Disease.运动神经元病患者的临终特征及姑息治疗提供情况
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Effect of specialist palliative care services on quality of life in adults with advanced incurable illness in hospital, hospice, or community settings: systematic review and meta-analysis.专科姑息治疗服务对住院、临终关怀机构或社区环境中晚期不治之症成年患者生活质量的影响:系统评价与荟萃分析
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运动神经元病的姑息治疗:我们目前的进展如何?

Palliative care in motor neurone disease: where are we now?

作者信息

Oliver David J

机构信息

The Tizard Centre, University of Kent, Canterbury, UK.

出版信息

Palliat Care. 2019 Jan 21;12:1178224218813914. doi: 10.1177/1178224218813914. eCollection 2019.

DOI:10.1177/1178224218813914
PMID:30718958
原文链接:https://pmc.ncbi.nlm.nih.gov/articles/PMC6348498/
Abstract

Palliative care has a very important role in the care of patients with motor neurone disease and their families. There is increasing emphasis on the multidisciplinary assessment and support of patients within guidelines, supported by research. This includes the telling of the diagnosis, the assessment and management of symptoms, consideration of interventions, such as gastrostomy and ventilatory support, and care at the end of life. The aim of palliative care is to enable patients, and their families, to maintain as good a quality of life as possible and helping to ensure a peaceful death.

摘要

姑息治疗在运动神经元病患者及其家属的护理中发挥着非常重要的作用。在研究的支持下,越来越强调在指南范围内对患者进行多学科评估和支持。这包括告知诊断结果、症状的评估和管理、对诸如胃造口术和通气支持等干预措施的考虑以及临终护理。姑息治疗的目的是使患者及其家属能够维持尽可能好的生活质量,并帮助确保安详离世。