针对肌萎缩侧索硬化症全病程的综合康复护理
Comprehensive rehabilitative care across the spectrum of amyotrophic lateral sclerosis.
作者信息
Paganoni Sabrina, Karam Chafic, Joyce Nanette, Bedlack Richard, Carter Gregory T
机构信息
Department of Physical Medicine and Rehabilitation, Harvard Medical School, Spaulding Rehabilitation Hospital, Massachusetts General Hospital and Boston VA Healthcare System, Boston, MA, USA.
Department of Neurology, University of North Carolina School of Medicine, Chapel Hill, NC, USA.
出版信息
NeuroRehabilitation. 2015;37(1):53-68. doi: 10.3233/NRE-151240.
Abstract
BACKGROUND
Amyotrophic lateral sclerosis (ALS or Lou Gehrig's disease) is a neurodegenerative disease that results in progressive muscle weakness and wasting. There is no known cure and the disease is uniformly fatal.
PURPOSE
This review discusses current concepts in ALS care, from breaking the diagnosis to end-of-life care. People with ALS have several multidisciplinary needs due to a complex and dynamic disease process. They benefit from rehabilitation interventions that are individualized and have the goal of optimizing independence, function, and safety. These strategies also help minimize symptomatic burden and maximize quality of life.
CONCLUSION
Patient-centered, multidisciplinary care has a significant impact on the life of people with ALS and is the current standard of care for this patient population.
摘要
背景
肌萎缩侧索硬化症（ALS，即卢伽雷氏病）是一种神经退行性疾病，会导致进行性肌肉无力和萎缩。目前尚无已知的治愈方法，该疾病最终都会致命。
目的
本综述讨论了ALS护理中的当前概念，从确诊到临终关怀。由于疾病过程复杂且动态变化，ALS患者有多种多学科需求。他们受益于个性化的康复干预措施，这些措施旨在优化独立性、功能和安全性。这些策略还有助于将症状负担降至最低，并使生活质量最大化。
结论
以患者为中心的多学科护理对ALS患者的生活有重大影响，是该患者群体目前的护理标准。
相似文献
1
Comprehensive rehabilitative care across the spectrum of amyotrophic lateral sclerosis.针对肌萎缩侧索硬化症全病程的综合康复护理
NeuroRehabilitation. 2015;37(1):53-68. doi: 10.3233/NRE-151240.
2
Rehabilitation in amyotrophic lateral sclerosis: why it matters.肌萎缩侧索硬化症的康复治疗：为何重要。
Muscle Nerve. 2014 Jul;50(1):4-13. doi: 10.1002/mus.24202. Epub 2014 May 17.
3
Care management in amyotrophic lateral sclerosis.肌萎缩侧索硬化症的护理管理
Rev Neurol (Paris). 2017 May;173(5):288-299. doi: 10.1016/j.neurol.2017.03.031. Epub 2017 Apr 29.
4
[Multidisciplinary care and therapeutic advances in amyotrophic lateral sclerosis].[肌萎缩侧索硬化症的多学科护理与治疗进展]
Rev Med Chil. 2022 Dec;150(12):1633-1646. doi: 10.4067/s0034-98872022001201633.
5
A roadmap for early psychosocial support in palliative care for people impacted by ALS-reducing suffering, building resiliency, and setting the stage for delivering timely transdiagnostic psychosocial care.在影响 ALS 的人群的姑息治疗中进行早期心理社会支持的路线图——减轻痛苦、增强韧性，为及时提供跨诊断心理社会关怀奠定基础。
Transl Behav Med. 2023 Sep 12;13(9):722-726. doi: 10.1093/tbm/ibad024.
6
The impact of rehabilitative interventions on quality of life: a qualitative evidence synthesis of personal experiences of individuals with amyotrophic lateral sclerosis.康复干预对生活质量的影响：肌萎缩侧索硬化症患者个人经历的定性证据综合评价。
Qual Life Res. 2018 Apr;27(4):845-856. doi: 10.1007/s11136-017-1754-7. Epub 2017 Dec 4.
7
Against all odds: positive life experiences of people with advanced amyotrophic lateral sclerosis.战胜重重困难：晚期肌萎缩侧索硬化症患者的积极生活经历
Health Soc Work. 1998 Feb;23(1):35-43. doi: 10.1093/hsw/23.1.35.
8
Frequency of euthanasia, factors associated with end-of-life practices, and quality of end-of-life care in patients with amyotrophic lateral sclerosis in the Netherlands: a population-based cohort study.荷兰肌萎缩侧索硬化症患者安乐死的频率、与临终实践相关的因素以及临终关怀质量：一项基于人群的队列研究。
Lancet Neurol. 2023 Jul;22(7):591-601. doi: 10.1016/S1474-4422(23)00155-2.
9
Supportive and symptomatic management of amyotrophic lateral sclerosis.肌萎缩侧索硬化症的支持性和对症治疗。
Nat Rev Neurol. 2016 Sep;12(9):526-38. doi: 10.1038/nrneurol.2016.111. Epub 2016 Aug 12.
10
Clinical recognition and management of amyotrophic lateral sclerosis: the nurse's role.临床识别与肌萎缩侧索硬化症的管理：护士的角色。
J Neurosci Nurs. 2011 Aug;43(4):205-14. doi: 10.1097/JNN.0b013e3182212a6c.
引用本文的文献
1
Personalized ML-based wearable robot control improves impaired arm function.基于个性化机器学习的可穿戴机器人控制可改善受损的手臂功能。
Nat Commun. 2025 Aug 2;16(1):7091. doi: 10.1038/s41467-025-62538-8.
2
Pathophysiology, Clinical Heterogeneity, and Therapeutic Advances in Amyotrophic Lateral Sclerosis: A Comprehensive Review of Molecular Mechanisms, Diagnostic Challenges, and Multidisciplinary Management Strategies.肌萎缩侧索硬化症的病理生理学、临床异质性及治疗进展：分子机制、诊断挑战与多学科管理策略的全面综述
Life (Basel). 2025 Apr 14;15(4):647. doi: 10.3390/life15040647.
3
Physical therapy for the management of global function, fatigue and quality of life in amyotrophic lateral sclerosis: systematic review and meta-analyses.肌萎缩侧索硬化症的全身功能、疲劳和生活质量的物理治疗：系统评价和荟萃分析。
BMJ Open. 2024 Aug 25;14(8):e076541. doi: 10.1136/bmjopen-2023-076541.
4
Exploring Advancements in the Treatment of Amyotrophic Lateral Sclerosis: A Comprehensive Review of Current Modalities and Future Prospects.探索肌萎缩侧索硬化症治疗的进展：当前治疗方式及未来前景的全面综述
Cureus. 2023 Sep 18;15(9):e45489. doi: 10.7759/cureus.45489. eCollection 2023 Sep.
5
Examining the Interaction between Exercise, Gut Microbiota, and Neurodegeneration: Future Research Directions.探究运动、肠道微生物群与神经退行性变之间的相互作用：未来研究方向
Biomedicines. 2023 Aug 14;11(8):2267. doi: 10.3390/biomedicines11082267.
6
Triclustering-based classification of longitudinal data for prognostic prediction: targeting relevant clinical endpoints in amyotrophic lateral sclerosis.基于三聚类的纵向数据分析分类用于预后预测：以肌萎缩侧索硬化症的相关临床终点为目标。
Sci Rep. 2023 Apr 15;13(1):6182. doi: 10.1038/s41598-023-33223-x.
7
Maximum Phonation Time as a Surrogate Marker for Airway Clearance Physiologic Capacity and Pulmonary Function in Individuals With Amyotrophic Lateral Sclerosis.最大发音时间可作为肌萎缩侧索硬化症患者气道清除生理能力和肺功能的替代标志物。
J Speech Lang Hear Res. 2023 Apr 12;66(4):1165-1172. doi: 10.1044/2022_JSLHR-22-00522. Epub 2023 Mar 6.
8
Research progress in extracorporeal shock wave therapy for upper limb spasticity after stroke.中风后上肢痉挛的体外冲击波治疗研究进展
Front Neurol. 2023 Feb 9;14:1121026. doi: 10.3389/fneur.2023.1121026. eCollection 2023.
9
Ultrasound-guided glenohumeral joint injections for shoulder pain in ALS: A case series.超声引导下肱盂关节注射治疗肌萎缩侧索硬化症肩部疼痛：病例系列
Front Neurol. 2023 Feb 2;13:1067418. doi: 10.3389/fneur.2022.1067418. eCollection 2022.
10
Physical therapy for the management of motor symptoms in amyotrophic lateral sclerosis: protocol for a systematic review.肌萎缩侧索硬化症运动症状管理的物理治疗：系统评价方案。
BMJ Open. 2022 Nov 22;12(11):e063689. doi: 10.1136/bmjopen-2022-063689.
本文引用的文献
1
Depression and wish to die in a multicenter cohort of ALS patients.肌萎缩侧索硬化症（ALS）患者多中心队列中的抑郁与想死意愿
Amyotroph Lateral Scler Frontotemporal Degener. 2015 Jun;16(3-4):265-73. doi: 10.3109/21678421.2014.980428. Epub 2014 Dec 8.
2
Dextromethorphan/quinidine: a review of its use in adults with pseudobulbar affect.右美沙芬/奎尼丁：用于治疗成人假性延髓情绪的综述。
Drugs. 2015 Jan;75(1):83-90. doi: 10.1007/s40265-014-0328-z.
3
Upper extremity orthoses use in amyotrophic lateral sclerosis/motor neuron disease: three case reports.上肢矫形器在肌萎缩侧索硬化症/运动神经元病中的应用：三例病例报告
Hand (N Y). 2014 Dec;9(4):543-50. doi: 10.1007/s11552-014-9626-x.
4
Crowdsourced analysis of clinical trial data to predict amyotrophic lateral sclerosis progression.众包分析临床试验数据以预测肌萎缩侧索硬化症进展。
Nat Biotechnol. 2015 Jan;33(1):51-7. doi: 10.1038/nbt.3051. Epub 2014 Nov 2.
5
Noninvasive brain-computer interface enables communication after brainstem stroke.无创脑机接口可实现脑干中风后的交流。
Sci Transl Med. 2014 Oct 8;6(257):257re7. doi: 10.1126/scitranslmed.3007801.
6
Ice bucket challenge cash may help derisk ALS drug research.冰桶挑战筹集的资金可能有助于降低肌萎缩侧索硬化症药物研究的风险。
Nat Med. 2014 Oct;20(10):1080. doi: 10.1038/nm1014-1080.
7
Health and social care costs of managing amyotrophic lateral sclerosis (ALS): an Irish perspective.肌萎缩侧索硬化症（ALS）管理的健康和社会护理成本：爱尔兰视角。
Amyotroph Lateral Scler Frontotemporal Degener. 2015 Mar;16(1-2):58-62. doi: 10.3109/21678421.2014.957322. Epub 2014 Oct 6.
8
A review of options for treating sialorrhea in amyotrophic lateral sclerosis.肌萎缩侧索硬化症流涎治疗方案综述
Respir Care. 2015 Mar;60(3):446-54. doi: 10.4187/respcare.02856. Epub 2014 Sep 16.
9
The evaluation of pain in amyotrophic lateral sclerosis: a case controlled observational study.肌萎缩侧索硬化症疼痛的评估：一项病例对照观察性研究。
Amyotroph Lateral Scler Frontotemporal Degener. 2014 Dec;15(7-8):520-7. doi: 10.3109/21678421.2014.951944. Epub 2014 Sep 10.
10
Palliative Care Issues in Amyotrophic Lateral Sclerosis: An Evidenced-Based Review.肌萎缩侧索硬化症的姑息治疗问题：一项基于证据的综述
Am J Hosp Palliat Care. 2016 Feb;33(1):84-92. doi: 10.1177/1049909114548719. Epub 2014 Sep 8.
Zotero 插件