Keeping weight steady after tube feeding may help ALS survival

Study suggests benefit tied to stable weight, not calorie levels

Written by Andrea Lobo, PhD |

Three people hold up objects that form a
  • ALS patients often experience weight loss, which is linked to poorer survival.
  • Maintaining body weight after starting tube feeding is associated with longer survival in ALS.
  • Weight stability after tube feeding may be more important for survival than initial calorie intake.

Maintaining body weight after starting enteral nutrition, or tube feeding, may help extend survival in people with amyotrophic lateral sclerosis (ALS), a study in Japan suggests.

In an analysis of 121 patients, those with smaller weight declines after starting tube feeding lived significantly longer, regardless of calorie intake at the time tube feeding began, suggesting “the clinical benefit of nutritional intervention in ALS may be mediated primarily through stabilization of body weight,” the researchers wrote.

Notably, the scientists found no significant correlation between weight decline before and after tube feeding initiation, indicating that “nutritional intervention has the potential to alter the course of weight loss.”

The study, “Weight maintenance following enteral nutrition is associated with prolonged survival in amyotrophic lateral sclerosis,” was published in the Journal of Neurology.

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Weight loss common in ALS, especially with swallowing problems

ALS is marked by progressive muscle weakness that eventually interferes with a person’s ability to perform daily activities. Over time, most patients develop swallowing difficulties, which, along with higher energy use and metabolism, can contribute to significant weight loss.

Tube feeding, which involves placing a tube to deliver nutrients and liquids directly into the stomach, is widely used for nutritional support when patients cannot eat enough by mouth. Because weight loss is associated with poorer survival outcomes, this approach aims to stabilize weight and potentially prolong survival in people experiencing substantial weight loss.

However, it remains unclear whether the benefits of tube feeding come from its ability to maintain weight or whether higher energy intake also plays a role.

In this study, researchers in Japan investigated the association between energy intake at the initiation of enteral nutrition and subsequent changes in body weight and survival in ALS patients. A total of 121 patients, with a mean age of 66 years at disease onset, were enrolled at a hospital in Tokyo between 2010 and 2022.

Nutritional status was determined by the annual decrease in body mass index (BMI), a measure based on height and weight, and energy intake was calculated as the sum of oral intake and intake via a feeding tube. Total energy requirements were initially estimated by a physician based on the degree of motor disability, body weight changes, and energy needs.

Weight stability after tube feeding linked to longer survival

Participants’ BMI gradually declined from disease onset, but analyses indicated that those with higher calorie intake at the start of tube feeding had smaller declines in body weight afterward.

Importantly, a smaller BMI decline after starting tube feeding was associated with significantly longer survival, but calorie intake at the start of enteral nutrition was not significantly associated with survival. After accounting for multiple factors, only BMI decline after tube feeding and respiratory decline before tube feeding were significantly associated with shorter patient survival.

Patients were then classified into four groups based on body weight loss and calorie intake. Results were consistent with earlier findings, with patients whose BMI declined less than the median of 0.8 kg/m2 per year having better survival rates than those with greater BMI declines, independently of energy intake at the time tube feeding began.

Specifically, in this four-group analysis, median survival after tube feeding ranged from 1.58 to 2.67 years among those with BMI decreases below 0.8, and from 0.84 to 1.08 years among those with higher BMI reductions.

According to the researchers, “weight maintenance following the initiation of enteral nutrition (EN) was significantly associated with prolonged survival in patients with amyotrophic lateral sclerosis,” suggesting that “monitoring and achieving weight maintenance after EN initiation may be more important for improving survival than targeting a specific caloric intake.”

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