The benefit of evolving multidisciplinary care in ALS: a diagnostic cohort survival comparison

Abstract

Background: Care for people with amyotrophic lateral sclerosis (ALS) has altered at King’s College Hospital over the last 20 years. The clinic has been a multidisciplinary, specialist, tertiary referral centre since 1995 with a large team with integrated palliative and respiratory care since 2006. We hypothesised that these changes would improve survival. Methods: In this retrospective observational study, patients diagnosed with El Escorial definite, probable and possible ALS between 1995–1998 and 2008–2011 were followed up. The primary outcome measure was a chi-square test for the proportion of each cohort surviving. Kaplan-Meier survival analysis and Cox multivariate regression were secondary analyses. Results: There was low reporting of some interventions. Five hundred and forty-seven people were included. Survival between the cohorts was significantly different (p = 0.022) with a higher proportion surviving during 2008–2011. Survival time was 21.6 (95% CI 19.2–24.0) months in the 2008–2011 cohort compared to 19.2 years (15.6–21.6) in the 1995–1998 cohort (log rank p = 0.018). Four hundred and ninety-three cases were included in the Cox regression. Diagnostic cohort was a significant predictor variable (HR 0.79 (0.64–0.97) p = 0.023). Conclusions: These results support the hypothesis that integrated specialist clinics with multidisciplinary input improve survival in ALS.

Keywords:

• Motor neuron disease
• amyotrophic lateral sclerosis
• multidisciplinary team
• multidisciplinary care
• survival
• care quality

Acknowledgements

This paper represents independent research part funded by the National Institute for Health Research (NIHR) Biomedical Research Centre at South London and Maudsley NHS Foundation Trust and King’s College London. Funding was also received by the Motor Neurone Disease Association and NIHR Collaboration for Leadership in Applied Health Research and Care South London at King’s College Hospital NHS Foundation Trust. This is an EU Joint Programme – Neurodegenerative Disease Research (JPND) project. The project is supported through the following funding organisations under the aegis of JPND – www.jpnd.eu (United Kingdom, Medical Research Council (MR/L501529/1) and Economic and Social Research Council (ES/L008238/1)). The work leading up to this publication was funded by the European Community’s Health Seventh Framework Programme (FP7/2007–2013; grant agreement number 259867), Horizon 2020 Programme (H2020-PHC-2014-two-stage; grant agreement number 633413) and the Charities Research Motor Neurone and Motor Neurone Disease Association. The funding sources played no role in the preparation of this manuscript.

Declaration of interest

The authors have no conflicts of interest to declare.

Funding

The funding grant number is MNDA Al-Chalabi/Mar15/931-794 Al-Chalab. The grant was supplied by the Motor Neuron Disease Association.