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Research paper
A multidisciplinary clinic approach improves survival in ALS: a comparative study of ALS in Ireland and Northern Ireland
  1. James Rooney1,
  2. Susan Byrne1,
  3. Mark Heverin1,
  4. Katy Tobin1,
  5. Alison Dick2,
  6. Colette Donaghy2,
  7. Orla Hardiman1
  1. 1Department of Academic Neurology, Trinity Biomedical Sciences Institute Trinity College, Dublin, Ireland
  2. 2Department of Neurology, Royal Victoria Hospital, Belfast, UK
  1. Correspondence to Dr James Rooney, Academic Unit of Neurology, Trinity Biomedical Sciences Institute, Trinity College, Dublin, Ireland; jrooney{at}rcsi.ie

Abstract

Background 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.

Methods 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.

Results 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.

Conclusions 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.

  • ALS
  • EPIDEMIOLOGY
  • MOTOR NEURON DISEASE

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