Paganoni Sabrina, Karam Chafic, Joyce Nanette, Bedlack Richard, Carter Gregory T
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.
NeuroRehabilitation. 2015;37(1):53-68. doi: 10.3233/NRE-151240.
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.
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.
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.
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。
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。
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。