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肌萎缩侧索硬化症的护理管理

Care management in amyotrophic lateral sclerosis.

作者信息

Soriani M-H, Desnuelle C

机构信息

Centre de référence maladies neuromusculaire/SLA, university hospital of Nice, CS 51069, 06001 Nice cedex 1, France.

Centre de référence maladies neuromusculaire/SLA, university hospital of Nice, CS 51069, 06001 Nice cedex 1, France.

出版信息

Rev Neurol (Paris). 2017 May;173(5):288-299. doi: 10.1016/j.neurol.2017.03.031. Epub 2017 Apr 29.

Abstract

Amyotrophic lateral sclerosis (ALS) is a relentlessly progressive and fatal neurodegenerative disease characterized by progressive weakness of voluntary muscles of movement as well as those for swallowing, speech and respiration. In the absence of curative treatment, care can improve quality of life, prolong survival, and support ALS patients and their families, and also help them to anticipate and prepare for the end of life. Multidisciplinary management in tertiary centers is recommended in close collaboration with general practitioners, home carers and a dedicated health network. Patients' follow-up deals mainly with motor impairment and physical disability, adaptation, nutrition and respiratory function. Involvement of palliative care as part of the multidisciplinary team management offers patients the possibility of discussing their end of life issues. This review summarizes the different aspects of ALS care, from delivering the diagnosis to the end of life, and the organization of its management.

摘要

肌萎缩侧索硬化症(ALS)是一种无情进展且致命的神经退行性疾病,其特征为运动的随意肌以及吞咽、言语和呼吸相关肌肉进行性无力。在缺乏治愈性治疗的情况下,护理可改善生活质量、延长生存期,并为ALS患者及其家庭提供支持,还能帮助他们对生命终结有所预期并做好准备。建议在三级医疗中心进行多学科管理,并与全科医生、居家护理人员及专门的健康网络密切协作。患者随访主要涉及运动障碍与身体残疾、适应性、营养及呼吸功能。姑息治疗作为多学科团队管理的一部分,使患者能够讨论其生命终结相关问题。本综述总结了ALS护理从诊断到生命终结的不同方面及其管理组织。

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