Feeding tube best placed before major weight loss with ALS: Study

Survival seen as affected by drop in weight between diagnosis and gastrostomy

Marisa Wexler, MS avatar

by Marisa Wexler, MS |

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A person sits on a hospital gurney while a red arrow points to a set of swinging doors.

People with amyotrophic lateral sclerosis (ALS) who get a feeding tube placed after loosing a lot of weight are more likely to die within a few months than those who receive feeding support before major weight loss, a study reports.

Findings suggest that feeding tubes placed before substantial weight loss may extend survival for people with ALS, the researchers said.

The study, “Predictors of mortality post-gastrostomy in motor neuron disease patients,” was published in Muscle and Nerve.

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ALS, also called motor neuron disease or MND, is a disorder that’s marked by progressive muscle weakness. As the disease progresses, patients will often lose the ability to effectively chew and swallow food.

In many cases, it becomes advisable to perform a gastrostomy, a surgical procedure where a tube is inserted through the wall of the abdomen into the stomach, allowing food to be delivered directly into the digestive tract.

Gastrostomy can be a lifesaving measure, helping people with ALS meet their nutritional needs when they can no longer ingest food. But there’s not clear guidance on when gastrostomy should be performed, the scientists noted.

To identify factors that are predictive of early mortality following gastrostomy, a team of scientists in Australia analyzed outcomes in 94 ALS patients who underwent the procedure at a hospital in Perth between 2015 and 2021. Their median time from disease diagnosis to gastrostomy was around eight months (227 days).

Researchers conducted statistical tests looking for variables that were associated with increased risk of death at 30, 90, or 180 days following feeding tube placement.

Some factors, such as poorer lung function and older age, were associated with an increased risk of death at some time points but not others. But across all the time points analyzed, results consistently showed that the risk of death was higher for patients who’d lost more weight before undergoing gastrostomy.

Editorial sees feeding tubes as ‘supportive intervention,’ but personal decision

“Our data consistently indicate that mortality at 90 and 180 days were influenced by the percentage of weight loss from diagnosis to gastrostomy, highlighting the importance of nutritional care in the MND population,” the researchers wrote.

The findings suggest that “gastrostomy placement prior to substantial weight loss may reduce the risk of weight loss-associated mortality,” the scientists added, stressing that further studies will be needed to test this idea definitively.

According to an editorial published alongside the study, these findings highlight that getting a feeding tube may be more than just a supportive measure for patients who have difficulty chewing and swallowing — timely intervention to allow adequate nutrition may affect the disease trajectory of ALS itself.

Gastrostomy “should now be considered a means of active supportive intervention, positively influencing the disease trajectory,” Gary L. Pattee, MD, a neurologist at the University of Nebraska Medical Center, wrote. “The importance of maintaining ideal body weight earlier in the disease process has now been recognized in multiple clinical studies as essential in achieving prolonged patient survival.”

While these results highlight the potential benefits of gastronomy, Pattee stressed that getting a feeding tube is a major decision and patients’ wishes need to be prioritized.

“Gastrostomy is a major clinical and personal decision, which should involve shared decision-making between the medical team, patient and caregivers, always being respectful of the patient’s ultimate wishes,” he wrote.