University of Minnesota College of Biological Sciences, Minneapolis, MN, USA.
John T. Milliken Department of Medicine, Washington University School of Medicine in St. Louis, MO, USA.
Am J Hosp Palliat Care. 2022 Jul;39(7):865-873. doi: 10.1177/10499091211049386. Epub 2021 Sep 28.
Amyotrophic Lateral Sclerosis (ALS) is a progressive and incurable neurodegenerative disease resulting in the loss of motor neurons, eventually leading to death. ALS results in complex physical, emotional, and spiritual care needs. Specialty Palliative Care (SPC) is a medical specialty for patients with serious illness that provides an extra layer of support through complicated symptom management, goals of care conversations, and support to patients and families during hard times. Using MEDLINE, APA Psychinfo, and Dynamed databases, we reviewed the literature of SPC in ALS to inform and support an expert opinion perspective on this topic. This manuscript focuses on several key areas of SPC for ALS including insurance and care models, advance care planning, symptom management, quality of life, caregiver support, and end-of-life care. Recommendations to improve specialty palliative care for patients with ALS are reviewed in the discussion section.
肌萎缩侧索硬化症(ALS)是一种进行性且无法治愈的神经退行性疾病,会导致运动神经元丧失,最终导致死亡。ALS 导致复杂的身体、情感和精神护理需求。专科姑息治疗(SPC)是一种针对严重疾病患者的医疗专业,通过复杂的症状管理、护理目标对话以及在困难时期为患者和家属提供支持,提供额外的支持。我们使用 MEDLINE、APA Psychinfo 和 Dynamed 数据库,回顾了 SPC 在 ALS 中的文献,以提供信息并支持该主题的专家意见。本手稿重点介绍了 SPC 在 ALS 中的几个关键领域,包括保险和护理模式、预先护理计划、症状管理、生活质量、护理人员支持和临终关怀。在讨论部分,审查了改善 ALS 患者专科姑息治疗的建议。