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.
Why ProGas?
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.
What’s next?
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.”
The above article is so very true in my own personal experience. I was diagnosed with MND (lower motor) in Nov 2012 after 18 months since onset of symptoms and tests. I made a decision to have a PEG fit because I knew my breathing would be compromised at some stage. I had the small op in June 2013 and while my respiratory muscles were getting weaker I felt if this had been delayed I would have missed my opportunity. I say this because I was using the Nippy machine now and again (mainly on a morning when I suffered from headaches due to my breathing and through the day due to fatigue). I think making that decision was the best ever decision I have ever made because by October 2013 I was on the Nippy 24/7. If I had delayed the op then it would have been too late. I was very lucky to have gone until now before needing to use my PEG. Up until recently I was struggling with getting food down and weight was dropping off me. While it has been very hard coming off food (and I loved my grub!), I have started on feeds through PEG and I am putting on weight, am getting all the nutrients/vitamins I need and I save my energy from struggling to eat and it is less of a burden on my family who would normally have to stand for hours feeding me. I would highly recommend to anyone who is thinking about whether to or not go ahead to have it done before it is too late. It’s a no brainer!
Would be interesting to know what the extension to life with MND is with early insertion of PEG/PIG/RIG versus no gastrostomy/ later grastrostomy.
My husband was supposed to have the peg fitted , but because of complications had the rig instead! He too found it very difficult to swallow as he had the bulbar MND and was really struggling at times ,also he had lost lots of weight! But when it was finally fitted it was a godsend ,because not were we able it to stabilise his weight loss , but it took the pressure off him eating! Before that, he was constantly choking! unfortunately I lost my husband 9 months ago now , but I am convinced that had he not had this done when he did , then we would have lost him a lot sooner! I. totally agree with what the gentleman said above , personally I would highly recommend it myself too! It gave us those few extra precious months with our loved one!
I had a PEG fitted 8 years ago, three months after confirmed diagnosis. I have never used it for feed and have maintained my weight on a ‘soft diet’ because I cannot chew and swallowing ‘normal’ food causes choking. I have PLS and at my last clinic visit was told it is rare for PLS patients to need tube feeding and that I could have the PEG removed. I said “no thanks”. As PLS is not identified at initial diagnosis, surely ‘early’ PEG, RIG or PIG procedures will continue to be unnecessarily carried out for those who eventually are found to have PLS. I thought it was worth flagging this up when considering optimum timing.