Although there’s no cure for amyotrophic lateral sclerosis, managing it wisely can increase survival and improve patients’ and their families’ quality of life.
One tool for managing it is a feeding tube.
An article in the journal Neurology covered the pluses and minuses of using the tubes in ALS. It is titled “The yin and yang of gastrostomy in the management of ALS. Friend or foe?.”
At some point, ALS patients develop a condition known as dysphagia, or difficulty swallowing, which leads to weight loss and other problems.
The lack of nutrition that leads to weight loss also degrades muscles. This adds to ALS-related muscle loss from motor neuron death, accelerating patients’ decline.
Doctors have used feeding tubes for years to help manage ALS. The devices improve nutrient delivery to patients who can’t obtain enough orally. Doctors refer to tube feeding as percutaneous endoscopic gastronomy, or PEG, because it involves cutting a small hole in the abdomen to run a tube into the stomach.
The researchers cautioned that tube feeding should come at the right time, or it will actually harm patients.
“An overly aggressive policy for gastrostomy placement in patients with ALS may shorten their survival and increase the risk of death, particularly in patients already having respiratory compromise,” they wrote. “Excessively early placement exposes them to some procedural risk and may decrease quality of life during what should be their best remaining months.”
PEG should be started only when patients are having difficulty swallowing, losing a lot of weight, or are experiencing aspiration — inhaling vomit, blood, or mucus.
Several studies indicate PEG can increase the survival of patients whose disease has become severe. The difficulties such patients face include poor respiratory function and weight loss.
A lot of research has shown that after patients begin to be tube-fed, they gain weight and their quality of life improves. But some studies contradict this.
In recent years, more patients have been going to “radiologically inserted gastrostomy,” the research team noted. “It is less invasive than PEG and appears otherwise equivalent.” It could also be safer “in patients with respiratory dysfunction, as it employs a smaller tube and usually requires less sedation,” they added.
With radiologically inserted gastrostomy, doctors use x-rays to make the feeding-tube hole in the stomach smaller and more precise.
Interestingly, two studies reported that tube feeding led to a faster decline in patients’ condition and increased risk of them dying. One covered 331 patients and the other 481.
Another finding of the two studies was that patients who underwent radiologically inserted gastrostomy procedures had worse survival rates than those who had PEG procedures.
Researchers concluded that there’s no consensus about whether tube feeding is positive or negative. The team said doctors generally agree that the benefits depend on the patient’s condition, when a tube is inserted, and careful management of the insertion process and the tube’s use after the procedure.
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