Under the leadership of Dr Christopher McDermott, based at the Sheffield Institute for Translational Neuroscience (SITraN), research published today on 29 May 2015 in the Lancet Neurology highlights that better weight management in MND is key to survival.
Following on from initial results presented at the 25th International Symposium on ALS/MND in December 2014, the Prospective Gastrostomy (ProGas) study in MND aimed to investigate the optimal timing for gastrostomy in MND due to the lack of evidence available.
Types of gastrostomy
In some people living with MND, the muscles involved in swallowing can become slow, weak and/or uncoordinated. This can cause difficulty when eating and drinking, resulting in slower meal times and insufficient intake of nutrients. The resulting affect can cause weight loss and increased burden for carers.
To ease these problems alternative feeding methods such as gastrostomy can help. Feeding by gastrostomy is where a tube is inserted directly into the stomach through the abdomen. There are three main types of gastrostomy, percutaneous endoscopic gastrostomy (PEG), radiological inserted gastrostomy (RIG) and post oral image-guided gastrostomy (PIG), which is a ‘hybrid’ of the previous two methods. Click here to read our information on gastrostomy.
Current practice of gastrostomy feeding in MND is largely varied across the UK, and is based on individual preference and expert opinion. There is a lack of evidence to suggest what the optimal timing for gastrostomy is, or which method is most appropriate.
Funded by the Association, the ProGas study aimed to develop evidence-based guidelines to identify the most appropriate method and timing of gastrostomy in people living with MND in the UK.
About the study
This study is the first large-scale nationwide study on gastrostomy in MND. The team worked with 24 MND care centres and multidisciplinary clinics across the UK and recruited 345 people living with MND to take part.
Dr McDermott was interested in identifying the most appropriate method of gastrostomy insertion, in terms of safety and clinical outcomes, as well as the optimal timing for people to undergo gastrostomy.
Of those who underwent gastrostomy (323), the researchers found that all three methods of gastrostomy tested appeared to be as safe as each other, with no evidence of a difference in survival.
The importance of weight management
Although there was no difference in the three methods of gastrostomy tested, the ProGas study identified two factors that affected survival: age at onset of MND and percentage of weight loss at time of gastrostomy since diagnosis.
The researchers found that people who had less than 10% weight loss since diagnosis and before gastrostomy benefited most from the procedure and had an increase in survival compared to those who had 10% or greater weight loss before undergoing gastrostomy.
This affect of weight loss on survival following gastrostomy has led the researchers to recommend that people living with MND should undergo early gastrostomy (ie before a marked weight loss of 10%).
According to the results of this study, current guidelines of 10% weight loss may not be an ideal timing for gastrostomy insertion in MND. The researchers recommend an earlier better threshold to gastrostomy insertion in MND at approximately 5% weight loss to ensure better survival.
Is PEG best?
Although there was no difference in survival between the three gastrostomy methods, the findings from the study indicate that PEG may be the optimal method, before respiratory problems arise due to the ease of post-insertion tube management.
Dr McDermott said: “PEG is the preferred method of gastrostomy, when someone has good respiratory function and is able to lie flat and be sedated for the procedure, or PIG/RIG when there is significant compromise of respiratory function.”
Dr McDermott also highlighted that the main findings from the study are that the timing of gastrostomy is recommended when someone with MND has lost around 5% of their body weight.
Director of Research Development, Dr Brian Dickie commented: “Dr McDermott and his colleagues are keen to use these results to develop specific guidance on the use of gastrostomy in MND, to improve consistency of practice across MND clinics and therefore outcomes for patients.
“The findings can also be presented to the National Institute for Health and Care Excellence (NICE), which is currently in the process of creating broader, multidisciplinary Clinical Guidelines for the Assessment and Management of MND, due to be published next year.”