Department of Academic Neurology, Trinity Biomedical Sciences Institute Trinity College, Dublin, Ireland.
Department of Neurology, Royal Victoria Hospital, Belfast, UK.
J Neurol Neurosurg Psychiatry. 2015 May;86(5):496-501. doi: 10.1136/jnnp-2014-309601. Epub 2014 Dec 30.
Amyotrophic lateral sclerosis (ALS) is a progressive debilitating neurodegenerative disease, with a life expectancy of 3-5 years from first symptom. There is compelling evidence that those who attend a multidisciplinary clinic experience improved survival. The purpose of the study was to explore the survival of patients with ALS ascertained through population-based Registers in the Republic of Ireland (RoI) and Northern Ireland (NI), and to determine whether centralisation of services confers advantage compared with community-based care supported by a specialist care worker.
The island of Ireland is divided into two countries, RoI and NI, each with an independent healthcare system. Both countries have population-based ALS Registers with full ascertainment. Data from all 719 incident ALS cases from Ireland and NI, diagnosed between 1 January 2005 and 31 December 2010, were used in the analysis.
A survival benefit was identified for patients who attended the multidisciplinary ALS clinic in the RoI. (HR 0.59, 95% CI 0.49 to 0.71, p<0.001). This difference was preserved following multivariate analysis. A trend towards improved survival was noted for patients with ALS from NI when compared with RoI patients who did not attend a multidisciplinary clinic.
Centralised multidisciplinary care confers a survival advantage for patients with ALS and is superior to devolved community-based care. We propose that multiple decision-making processes within a multidisciplinary setting lead to an enriched set of clinical encounters for the patient and carer that enhances clinical outcome.
肌萎缩侧索硬化症（ALS）是一种进行性衰弱的神经退行性疾病，从首发症状出现到预期寿命为 3-5 年。有确凿的证据表明，那些参加多学科诊所的人会有更好的生存机会。本研究的目的是探讨通过爱尔兰共和国（RoI）和北爱尔兰（NI）的基于人群的登记处确定的 ALS 患者的生存情况，并确定与由专家护理人员支持的社区为基础的护理相比，服务集中是否具有优势。
爱尔兰岛分为两个国家，RoI 和 NI，每个国家都有独立的医疗保健系统。两国都有基于人群的 ALS 登记处，进行全面的确认。该分析使用了 2005 年 1 月 1 日至 2010 年 12 月 31 日期间在爱尔兰和 NI 诊断的所有 719 例新发 ALS 病例的数据。
在 RoI，参加多学科 ALS 诊所的患者具有生存优势。（HR 0.59，95%CI 0.49 至 0.71，p<0.001）。多元分析后仍保留了这一差异。与未参加多学科诊所的 RoI 患者相比，NI 的 ALS 患者的生存情况有所改善。
集中的多学科护理为 ALS 患者提供了生存优势，优于分散的社区为基础的护理。我们提出，多学科环境中的多个决策过程为患者和护理人员提供了更丰富的临床接触，从而改善了临床结果。
