Frequency, timing and outcome of gastrostomy tubes for amyotrophic lateral sclerosis/motor neurone disease--a record linkage study from the Scottish Motor Neurone Disease Register

J Neurol. 2004 Jul;251(7):813-7. doi: 10.1007/s00415-004-0429-9.


Aims: To describe the frequency, timing and outcome from gastrostomy in amyotrophic lateral sclerosis/motor neurone disease (ALS/MND).

Methods: The Scottish MND Register, a population based disease register (1989-1998), with record linkage to the Scottish Morbidity 1 dataset of hospital discharges coded for gastrostomy procedure was used. Descriptive statistics of patients undergoing gastrostomy were extracted. Survival analysis used Kaplan Meier and Cox proportional hazards methods.

Results: For patients diagnosed between 1989-98, 142 percutaneous endoscopic gastrostomy (PEG) insertion episodes were identified in 1226 patients, 130 of which occurred before the censoring date of 31 December 1999.Annually, on average, 5% of all revalent patients underwent gastrostomy, and this rate appeared to double between 1989-98. The cumulative incidence of gastrostomy was 11%. Mean age at PEG tube insertion was 66.8 years, with a mean disease duration of 24 months. Median survival from PEG tube insertion was 146 days. The 1 month mortality after gastrostomy was 25%. Gastrostomy did not confer a survival advantage compared with no gastrostomy.

Conclusions: We found that gastrostomy feeding tubes are being inserted more frequently in people with ALS/MND. An unexpectedly high early mortality was detected which probably reflects a lack of selection bias compared with previously published data. It is possible that changes in the practice of gastrostomy placement since 1998 result in better outcomes for patients with ALS/MND. Prospective studies are required to assess the risks and benefits of enteral nutrition in ALS/MND.

MeSH terms

  • Aged
  • Amyotrophic Lateral Sclerosis / complications*
  • Amyotrophic Lateral Sclerosis / mortality
  • Brain Stem / physiopathology
  • Deglutition Disorders / etiology
  • Deglutition Disorders / mortality
  • Deglutition Disorders / therapy*
  • Enteral Nutrition / statistics & numerical data*
  • Enteral Nutrition / trends
  • Female
  • Gastrostomy / statistics & numerical data*
  • Gastrostomy / trends
  • Humans
  • Male
  • Middle Aged
  • Outcome Assessment, Health Care / statistics & numerical data*
  • Prognosis
  • Registries / statistics & numerical data*
  • Riluzole / therapeutic use
  • Scotland
  • Survival Rate
  • Time Factors
  • Treatment Outcome


  • Riluzole