As well as biomedical research, we fund healthcare research to lead to better symptom management and support for people living with MND. On the final day of the symposium, Dr Stavroulakis from the Sheffield Institute for Translational Neuroscience (SITraN), presented results on his Association-funded research.
In some people living with MND, the muscles involved in chewing and swallowing can become slow, weak and/or uncoordinated. This can cause difficulty when eating and drinking.
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.
The most appropriate method and timing of gastrostomy is important and the ProGas study aimed to investigate UK practice of gastrostomy in people living with MND.
Dr Stavroulakis said: “ProGas was a large multi-centre study that looked into the UK practice of gastrostomy in people living with MND.” This nationwide study worked with 24 MND care centres and multidisciplinary clinics, highlighting the importance of MND care centres in terms of MND research in the UK.
Dr Stavroulakis stated that he was particularly 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.
The most reported sign for recommendation for gastrostomy use in MND was difficulty at meal times, unsafe swallowing and marked weight loss. However, Dr Stavroulakis said that 14% of people living with MND deliberately delayed gastrostomy when it was mentioned to them, as they were unsure of the risks and benefits.
The ProGas study showed that around 50% of people living with MND underwent PEG, with only 12% undergoing PIG. Dr Stavroulakis said that this was not surprising due to this begin a relatively new technology that is not available at all centres.
Dr Stavroulakis said: “ProGas included 233 patients and demonstrated that the methods of gastrostomy are as safe as each other in relation to procedure risk. Choice of method should be based on an individual approach acknowledging patient respiratory function, weight loss, overall clinical condition and post-gastrostomy tube management.”
What do the results mean?
Dr Stavroulakis concluded: An optimal practice would be an early PEG placement and a new recommended safer threshold in relation to timing would be insertion at 5% of weight loss as 10% seems to impact greatly on survival. We hope that the findings of ProGas will inform clinical practice and help people living with MND, and those who support them, in their decision-making regarding gastrostomy placement”.
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