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

Abstract

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.

Key words::

• Amyotrophic lateral sclerosis
• motor neuron disease
• multidisciplinary clinic
• survival
• prognosis

Acknowledgements

The multidisciplinary clinic of the Sheffield Care and Research Centre for Motor Neuron Disorders is supported by programme funding from the UK Motor Neurone Disease Association (MNDA).

Declaration of interest: The authors report no conflicts of interest. The authors alone are responsible for the content and writing of the paper.