The natural history of motor neuron disease: assessing the impact of specialist care

Amyotroph Lateral Scler Frontotemporal Degener. 2013 Jan;14(1):13-9. doi: 10.3109/17482968.2012.690419. Epub 2012 May 29.


Many centres in the UK care for patients with motor neuron disease (MND) in a multidisciplinary clinic (MDC). It has been demonstrated that such care results in better prognosis for survival than care from a general neurology clinic (GNC). Whether this is due to higher use of disease-modifying interventions or an independent factor of attendance at a specialist clinic has not been established. Hence, we performed a retrospective review of hospital notes of patients with MND who were diagnosed and followed up in a GNC between 1998 and 2002 and in an MDC between 2006 and 2010. Overall, 162 patients attended a GNC, and 255 attended the MDC. The median survival from diagnosis was 19 months for patients who attended the MDC, compared to 11 months for those attending the GNC (hazard ratio 0.51, 95% CI 0.41-0.64). The Cox hazards model identified attendance at an MDC as an independently positive prognostic factor (HR 1.93, 95% CI 1.37-2.72, p < 0.001). We concluded that care at an MDC improves survival. While this effect is augmented by the increased use of riluzole, NIV and PEG, the data suggest that coordinated care independently improves the prognosis of MND patients.

Publication types

  • Research Support, Non-U.S. Gov't

MeSH terms

  • Aged
  • Disease Progression
  • Female
  • Humans
  • Male
  • Middle Aged
  • Motor Neuron Disease / diagnosis
  • Motor Neuron Disease / mortality*
  • Motor Neuron Disease / therapy*
  • Neurology / statistics & numerical data*
  • Patient Care Team / statistics & numerical data*
  • Prevalence
  • Prognosis
  • Survival Analysis
  • Survival Rate
  • Treatment Outcome
  • United Kingdom / epidemiology