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17 April 2026
Chiharu Matsuda(Unit for Intractable Disease Nursing Care), and colleagues published an article, “Association between weight maintenance after enteral nutrition and survival in amyotrophic lateral sclerosis” in Journal of Neurology.

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Association between weight maintenance after enteral nutrition and survival in amyotrophic lateral sclerosis

Publication Information

<Title of the paper>
“Weight maintenance following enteral nutrition is associated with prolonged survival in amyotrophic lateral sclerosis”
<Journal>
Journal of Neurology
DOI: 10.1007/s00415-026-13776-3
URL:https://doi.org/10.1007/s00415-026-13776-3

Key Points

  • Clarification of the association between post-enteral nutrition weight change and survival in ALS
  • Confirmation that higher caloric intake is associated with reduced weight loss
  • Demonstration that caloric intake itself is not associated with survival
  • Evidence that patients who maintained body weight had significantly longer survival
  • Background and Findings

Amyotrophic lateral sclerosis (ALS) is a progressive neurodegenerative disease characterized by motor neuron degeneration. In recent years, metabolic abnormalities and alterations in energy metabolism have also been recognized as contributing factors to disease pathology. Weight loss is a well-established prognostic factor in ALS. Although enteral nutrition (EN) is commonly introduced to address dysphagia and malnutrition, it has remained unclear whether caloric intake or weight change is more important for survival after EN initiation.

In this study, we retrospectively analyzed 121 ALS patients who received enteral nutrition. We examined the relationship between caloric intake at the initiation of EN, subsequent changes in body weight (BMI), and survival.

The results demonstrated that patients with less weight loss after EN initiation had significantly longer survival (Fig. 2). In contrast, caloric intake at EN initiation was not independently associated with survival (Fig. 2). Additionally, higher caloric intake was associated with reduced weight loss (Fig. 1).

Figure1
Figure 1. Relationship between caloric intake at the initiation of enteral nutrition and subsequent changes in body weight (BMI).
Higher caloric intake was associated with a smaller degree of weight loss.
Figure2
Figure 2. Comparison of survival after the initiation of enteral nutrition.
(A: stratified by weight change; B: stratified by caloric intake)
Patients with less weight loss had significantly longer survival, whereas no difference in survival was observed according to caloric intake.
Figure3
Figure 3. Survival according to combined categories of weight change and caloric intake.
Patients who maintained body weight showed the longest survival, whereas those with greater weight loss had shorter survival.

Future Perspectives

This study suggests that, in the nutritional management of ALS patients, maintaining body weight may be more important for prolonging survival than simply increasing caloric intake. In the future, individualized nutritional management tailored to each patient’s disease progression and metabolic status will be essential. Additionally, body weight change may serve as a useful indicator for evaluating treatment effects.

Funding

This study was supported by JSPS KAKENHI (Grant Numbers: 23K24656, 23K09948).

Significance for Website Publication

This study provides important clinical insights into nutritional management in ALS and suggests a potential shift in therapeutic goals from increasing caloric intake to maintaining body weight. The findings are directly applicable to clinical practice in nursing and nutrition management and highlight the importance of multidisciplinary care in rare diseases. The study holds significant clinical and social value and is suitable for dissemination as evidence in the field of intractable disease care.

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