Population-Based Evidence that Survival in Amyotrophic Lateral Sclerosis Is Related to Weight Loss at Diagnosis

Benoît Marin, Simona Arcuti, Pierre Jesus, Giancarlo Logroscino, Massimiliano Copetti, Andrea Fontana, Marie Nicol, Marie Raymondeau, Jean Claude Desport, Pierre Marie Preux, Philippe Couratier

Research output: Contribution to journalArticlepeer-review


Background/Aims: In a population-based setting, we aimed to (i) describe weight loss (WL) of amyotrophic lateral sclerosis (ALS) patients at the time of diagnosis and (ii) evaluate the association between WL and survival. Methods: All patients recruited in the FRALim register (2000-2013) were considered to be included in this study. Time-to-death analyses were performed using a multivariable Cox model. Model discrimination and calibration were assessed. Results: Among 322 patients in the register, 261 (81%) were included. At the time of diagnosis, 50.6% of patients reported a WL of more than 5%: 14.6% with WL between 5 and 10% and 36.0% with a WL of more than 10%. WL was independently associated with survival (p = 0.002). Patients with a WL of 10% or more experienced a 45% increase in the risk of death (95% CI 6-99) with respect to patients with a WL lower than 5% or no WL. The introduction of WL significantly improved the model's discrimination achieving a survival C statistic of 79.5% (95% CI 75.6-83.5, p = 0.006) at 12 months. Conclusion: More than 50% of ALS patients experience a WL of more than 5% at the time of diagnosis. This finding highlights the need for randomized trials to evaluate the effect of nutritional interventions to improve ALS survival.

Original languageEnglish
JournalNeurodegenerative Diseases
Publication statusAccepted/In press - Feb 12 2016


  • Amyotrophic lateral sclerosis
  • Malnutrition
  • Population-based setting
  • Prognosis
  • Register#
  • Weight loss

ASJC Scopus subject areas

  • Clinical Neurology
  • Neurology


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