Swallowing problems are an incredibly common cause of malnutrition and weight loss in MND patients. To add to this, weight loss in MND is associated with shorter survival. This means managing swallowing problems effectively is crucial to ensuring people living with MND can have the best possible quality of life.
Managing swallowing problems using gastrostomy
Swallowing problems in MND are often managed by placing a feeding tube directly into a patient’s stomach – this is known as a gastrostomy. The feeding tube can either be placed into the stomach via the mouth, or directly from outside the body.
An MND Association-funded study that concluded in 2015 provided much needed evidence on the best method and timing for gastrostomy. This study, known as ProGas, was led by Professor Chris McDermott at the Sheffield Institute for Translational Neuroscience (SITraN).
What were the results of ProGas?
Essentially, ProGas found that the method used for gastrostomy didn’t affect patient’s survival after the procedure. However, the greater the weight loss, from diagnosis to the time gastrostomy was performed, the worse the patient’s survival after the procedure.
To emphasise this point, of the patients who’d lost over 10% of their diagnosis weight at the time of gastrostomy, only 4% actually gained weight after the procedure, whereas 82% continued losing weight. Overall, they found that approximately 50% of patients lose weight in the three months following gastrostomy, irrespective of how much weight they lost before the procedure.
Naturally, these results raise questions about how effectively gastrostomy manages nutrition and weight loss. It is possible these results could be due to the natural disease progression. However, they could also be due to variation in symptom management methods after gastrostomy.
Tackling weight loss after gastrostomy
The MND Association has recently started funding a follow up project, known as PostGas, which aims to provide urgently needed evidence-based guidance on the best clinical practice for managing nutrition and weight loss after gastrostomy. This project started in June 2017 and is also led by Professor McDermott’s team at SITraN. One of the researchers in the team, Dr Haris Stavroulakis, recently presented their ProGas findings and introduced the PostGas study at our regional conference in York – you can view Dr Stavroulakis’ talk online.
What is the plan for PostGas?
A detailed survey asking what protocols doctors currently follow and what advice they give to patients after gastrostomy will be given to doctors at 24 specialist MND clinics across the UK. For example, doctors will be asked how they calculate the caloric intake requirements of their patients and what feeding plans they recommend.
Patients will then be recruited and followed for nine months after gastrostomy to monitor changes in factors such as weight and BMI, as well as self-perceived quality of life. These factors will be assessed 3, 6 and 9 months post-gastrostomy. Survival rates after the procedure will also be observed to see if different management methods have an effect on this.
Hopefully, PostGas will provide doctors with evidence-based guidance on how to improve nutrition and limit weight loss in people with MND after gastrostomy. Ultimately, this might extend patients’ survival and improve their quality of life.
My husband experienced drastic weight loss six months after having a rig fitted. He was a very tall man 6ft4* and still walking long distances ie five or six mile walks. His Fitbit showed he was burning over 3000 calories each day whereas he was given 2000 calories in feed. Eventually they were pursuaded to increase the supplements to 2500 then 2800 and his weight stabilised.