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Prolonged survival in motor neuron disease: a descriptive study of the King’s database 1990–2002
  1. M R Turner,
  2. M J Parton,
  3. C E Shaw,
  4. P N Leigh,
  5. A Al-Chalabi
  1. MND Care and Research Clinic, King’s College London, UK
  1. Correspondence to:
 Dr A Al-Chalabi, MND Care and Research Clinic, PO41 (ANC), Institute of Psychiatry, De Crespigny Park, London SE5 8AF, UK;
 ammar{at}iop.kcl.ac.uk

Abstract

Motor neuron disease is a clinically heterogeneous disease with significant differences in survival. The authors have characterised a subset of long term survivors seen in a tertiary clinic over a 12 year period in terms of clinical variables and demographics, comparing them with short term survivors and the remaining population. Thirty of 769 patients survived more than 10 years, corresponding to 4% of the total population. Significantly younger onset of disease symptoms and a predominance of pure upper motor neuron signs at presentation characterised the long term survivors, but factors traditionally regarded as being associated with poor prognosis were also well represented. For a few people with motor neuron disease there remains the hope, whatever the initial presentation, that their subsequent survival will be longer than expected.

  • amyotrophic lateral sclerosis
  • database
  • motor neurone disease
  • MND, motor neuron disease
  • ALS, amyotrophic lateral sclerosis
  • PLS, primary lateral sclerosis
  • FVC, forced vital capacity

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Footnotes

  • Funding: MRT is a Wellcome Trust Clinical Research Training Fellow. MJP is funded through a scholarship from The Guarantors of Brain. AAC is funded by a Medical Research Council Clinician Scientist Fellowship. We are most grateful to the Motor Neuron Disease Association (UK) who provide funding for the MND Care & Research Clinic.

  • Competing interests: none declared

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