优势与机遇：美国临床医生对肌萎缩侧索硬化症（ALS）姑息治疗的看法

Strengths and Opportunities: Clinicians' Perspectives on Palliative Care for Amyotrophic Lateral Sclerosis (ALS) in the United States.

作者信息

Bischoff Kara E, Kojimoto Gayle, O'Riordan David L, Leavell Yaowaree L, Maiser Samuel, Grouls Astrid, Smith Alexander K, Pantilat Steven Z, Kluger Benzi M, Mehta Ambereen K

机构信息

Division of Palliative Medicine, Department of Medicine, University of California, San Francisco, San Francisco, California, USA.

Department of Neurology, Oregon Health and Sciences University, Portland, Oregon, USA.

出版信息

Muscle Nerve. 2025 Sep;72(3):455-463. doi: 10.1002/mus.28458. Epub 2025 Jun 12.

DOI:10.1002/mus.28458

PMID:40501419

原文链接:https://pmc.ncbi.nlm.nih.gov/articles/PMC12338017/

Abstract

INTRODUCTION/AIMS: Little is known about the state of palliative care (PC) for people with ALS (pALS) in the U.S. We aimed to examine current practice regarding PC for pALS and how it can be improved.

METHODS

ALS and PC clinicians completed surveys about: (1) strengths and limitations of PC for pALS provided by ALS and PC teams, (2) reasons for and barriers to referring to specialty PC, and (3) how PC could be improved.

RESULTS

One hundred forty-one ALS clinicians from 72 institutions and 242 PC clinicians from 96 institutions in 30 states completed surveys. Half of ALS clinicians reported they are able to manage patients' pain (55%) and mood symptoms (52%) "very well." Fewer reported managing care partner needs (43%) and spiritual/existential distress (29%) "very well." Fifty-eight percent of pALS are referred to outpatient PC and 69% to hospice at some point in the illness. Barriers to referring include that PC programs are not sufficiently available to pALS. ALS clinicians generally felt satisfied with PC teams' care, but PC clinicians were less confident managing motor symptoms (51% confident) and helping care partners understand how to provide care (51%) and use equipment (25%). Most clinicians felt the quality of PC provided by ALS (77%) and PC (90%) teams is good/excellent. However, qualitative comments highlighted that both ALS and PC clinicians have knowledge gaps, and collaboration between ALS and PC clinicians should increase.

DISCUSSION

Clinician education, expansion of PC services, strengthened collaboration, and further research about PC for pALS are needed.

摘要

引言/目的：在美国，对于肌萎缩侧索硬化症患者（pALS）的姑息治疗（PC）状况了解甚少。我们旨在研究目前针对pALS的PC实践情况以及如何加以改善。

方法

ALS和PC临床医生完成了关于以下方面的调查：（1）ALS和PC团队提供的针对pALS的PC的优势与局限；（2）转诊至专科PC的原因和障碍；（3）如何改善PC。

结果

来自30个州72家机构的141名ALS临床医生和来自96家机构的242名PC临床医生完成了调查。一半的ALS临床医生报告称他们能够“很好地”处理患者的疼痛（55%）和情绪症状（52%）。较少人报告能够“很好地”满足照护伙伴的需求（43%）和处理精神/存在性困扰（29%）。58%的pALS在病程中的某个阶段被转诊至门诊PC，69%被转诊至临终关怀机构。转诊的障碍包括PC项目对pALS来说不够普及。ALS临床医生总体上对PC团队的照护感到满意，但PC临床医生在处理运动症状（51%有信心）、帮助照护伙伴了解如何提供照护（51%）以及使用设备（25%）方面信心较低。大多数临床医生认为ALS（77%）和PC（90%）团队提供的PC质量良好/优秀。然而，定性评论强调，ALS和PC临床医生都存在知识差距，ALS和PC临床医生之间的合作应加强。