Hogden Anne, Foley Geraldine, Henderson Robert D, James Natalie, Aoun Samar M
Australian Institute of Health Innovation, Macquarie University, Sydney, NSW, Australia.
Discipline of Occupational Therapy, School of Medicine, Trinity College Dublin, the University of Dublin, Republic of Ireland.
J Multidiscip Healthc. 2017 May 19;10:205-215. doi: 10.2147/JMDH.S134992. eCollection 2017.
Amyotrophic lateral sclerosis (ALS) is a progressive neurodegenerative disease, leading to death within an average of 2-3 years. A cure is yet to be found, and a single disease-modifying treatment has had a modest effect in slowing disease progression. Specialized multidisciplinary ALS care has been shown to extend survival and improve patients' quality of life, by providing coordinated interprofessional care that seeks to address the complex needs of this patient group. This review examines the nature of specialized multidisciplinary care in ALS and draws on a broad range of evidence that has shaped current practice. The authors explain how multidisciplinary ALS care is delivered. The existing models of care, the role of palliative care within multidisciplinary ALS care, and the costs of formal and informal care are examined. Critical issues of ALS care are then discussed in the context of the support rendered by multidisciplinary-based care. The authors situate the patient and family as key stakeholders and decision makers in the multidisciplinary care network. Finally, the current challenges to the delivery of coordinated interprofessional care in ALS are explored, and the future of coordinated interprofessional care for people with ALS and their family caregivers is considered.
肌萎缩侧索硬化症(ALS)是一种进行性神经退行性疾病,平均在2至3年内导致死亡。目前尚未找到治愈方法,单一的疾病修饰治疗在减缓疾病进展方面效果有限。专门的多学科ALS护理已被证明可以通过提供协调的跨专业护理来延长生存期并提高患者的生活质量,这种护理旨在满足该患者群体的复杂需求。本综述探讨了ALS专门多学科护理的性质,并借鉴了广泛的证据来塑造当前的实践。作者解释了多学科ALS护理是如何提供的。研究了现有的护理模式、姑息治疗在多学科ALS护理中的作用以及正式和非正式护理的成本。然后在多学科护理提供的支持背景下讨论了ALS护理的关键问题。作者将患者和家庭视为多学科护理网络中的关键利益相关者和决策者。最后,探讨了当前在ALS中提供协调的跨专业护理所面临的挑战,并考虑了为ALS患者及其家庭护理人员提供协调的跨专业护理的未来。