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肌萎缩侧索硬化症和姑息治疗:我们所处的位置和未来的道路。

Amyotrophic lateral sclerosis and palliative care: where we are, and the road ahead.

机构信息

Department of Medicine, University of Virginia School of Medicine, P.O. Box 800901, Charlottesville, Virginia 22908, USA.

出版信息

Muscle Nerve. 2012 Mar;45(3):311-8. doi: 10.1002/mus.22305.

Abstract

Patients with amyotrophic lateral sclerosis (ALS) have high symptom burdens, including pain, fatigue, dyspnea, and sialorrhea, and they must make difficult decisions about the use of life-prolonging therapies, such as long-term mechanical ventilation. The impact of ALS is also felt by family caregivers who often struggle to meet the heavy physical, financial, and emotional demands associated with the illness. Expert multidisciplinary care may improve both quality and length of life of patients with ALS. However, although advances have been made in the treatment of some symptoms, others, including pain management, remain poorly studied. Involvement of palliative care specialists as part of the ALS multidisciplinary team is recommended, as we continue to work toward improving the quality of life for patients and their families.

摘要

肌萎缩侧索硬化症(ALS)患者的症状负担很高,包括疼痛、疲劳、呼吸困难和流涎等,他们必须就使用生命延长疗法(如长期机械通气)做出艰难的决定。ALS 还会对家庭照顾者产生影响,他们经常难以应对与疾病相关的沉重的身体、经济和情感需求。专家多学科护理可能会提高 ALS 患者的生活质量和寿命。然而,尽管在某些症状的治疗方面取得了进展,但其他症状(包括疼痛管理)的研究仍然不足。建议将姑息治疗专家作为 ALS 多学科团队的一部分,因为我们继续努力提高患者及其家属的生活质量。

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