Key messages
We found no randomized or quasi-randomized (partially randomized) controlled trials that compare the use of a feeding tube to continued feeding by mouth for people with amyotrophic lateral sclerosis (ALS), or that investigate the safety and timing of different types or methods of feeding tube placement in people with ALS. ALS is the most common form of motor neuron disease (MND) and the two terms are often used interchangeably.
Randomized and quasi-randomized trials are studies that aim to ensure that groups of participants are similar. Such studies could inform clinicians and people with ALS on whether insertion of a feeding tube prolongs survival and improves quality of life compared to continued feeding by mouth. However, there are ethical challenges in conducting such a trial, as international expert consensus and guidelines support tube feeding for people with ALS despite the lack of high-quality evidence.
What is ALS?
ALS is a condition where the nerves that control movement cease to work. ALS causes weakness that worsens over time until the person becomes paralyzed. It is almost always fatal.
Most people with ALS develop swallowing difficulties. These can cause serious weight loss and people affected are at risk of inhaling food or drink, since effective swallowing normally protects the airway from foods and liquids. If food or drink enters the lower airways or lung, these may become inflamed or infected (a condition called aspiration pneumonia).
What is enteral tube feeding?
Enteral tube feeding is feeding through a tube. One of the ways the feeding tube is inserted is through the stomach wall into the stomach. This type of tube feeding is often recommended for people with ALS who develop swallowing difficulties, so they can maintain adequate nutrition and to lower the risk of aspiration pneumonia.
What did we want to do?
We wanted to review the evidence for using a feeding tube compared to not using a feeding tube on survival, nutritional status, and quality of life in people with ALS. We also wanted to collect evidence on complications of feeding tube placement.
What did we do?
We searched for randomized controlled trials that looked at enteral feeding compared with feeding by mouth in people with ALS, or that studied the safety and timing of different types or methods of feeding tube placement in people with ALS. We planned to summarize their results and evaluate the evidence.
What did we find?
We found no randomized controlled trials to indicate whether enteral tube feeding has benefits compared to continuation of feeding by mouth. We summarized the results of non-randomized studies in the discussion. However, these provide poorer quality evidence and can produce misleading results.
What are the limitations of the evidence?
We found no evidence that met our requirements for inclusion in the review.
How up to date is this review?
This review updates the previous review. The evidence is up to date to February 2021.
There are no RCTs or quasi-RCTs to indicate whether enteral tube feeding is effective compared to continuation of oral feeding for any of the outcome measures. Such RCTs are very unlikely to be performed for ethical reasons. RCTs evaluating the effect of different enteral tube insertion techniques and timings of tube placement on survival and quality of life of people with ALS dysphagia are feasible and warranted.
Maintaining adequate nutrition is critical for people with amyotrophic lateral sclerosis (ALS), also known as motor neuron disease (MND). Enteral tube feeding is offered to people experiencing difficulty swallowing (dysphagia) to prevent weight loss and aspiration pneumonia. Among the types of enteral tube feeding, percutaneous endoscopic gastrostomy (PEG) is the typical procedure offered to people with ALS and will be mainly discussed here.
To examine the effectiveness of percutaneous endoscopic gastrostomy or other enteral tube feeding in people with ALS, compared to oral feeds without enteral tube feeding on:
1. survival;
2. nutritional status;
3. quality of life.
To examine the incidence of minor and major complications of percutaneous endoscopic gastrostomy (PEG) and other enteral tube feeding procedures in people with ALS.
On 3 January 2020 and 6 February 2021, we searched the Cochrane Neuromuscular Specialised Register, CENTRAL, MEDLINE. Embase, ClinicalTrials.gov and WHO ICTRP. We screened the results to identify randomized controlled studies on enteral tube feeding in ALS. We reviewed all references from the search in published articles to identify any additional references.
We included randomized controlled trials (RCTs), quasi-RCTs, and cross-over trials evaluating the effectiveness and complications of PEG or other enteral tube feeding placement in ALS.
We used standard methodological procedures expected by Cochrane.
We found no RCTs or quasi-RCTs comparing the effectiveness of enteral tube feeding versus oral feeds without enteral tube feeding.