Tackling weight loss in MND – from ProGas to PostGas

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.

Commitment to COMMENDable research

Whilst the vast majority of MND research happens in the lab, there is also an increasing amount of research activity looking into how best to manage the various symptoms of the disease.  There are a lot of unanswered questions as to ‘What Works and What Doesn’t?’ and without a decent level of evidence, it is increasingly difficult in these cash-strapped days to get new or even existing types of therapy adopted into mainstream statutory care.

One such ‘Cinderella’ subject is psychological support for people with MND. It’s hardly surprising that studies show almost half of people diagnosed with MND experience depression and almost a third experience anxiety, yet there is very little guidance on how to best address these symptoms. As a result, formal psychological support is not routinely offered and where it is, the particular approach taken is based on best judgement rather than robust evidence. Continue reading

Evaluating a new neck support for people living with MND

We know that neck weakness can be a difficult symptom to manage in people with MND, and that the current offering of neck collars and supports do not always suit everyone. In order to come up with a solution to this, we are funding Dr Chris McDermott from the Sheffield Institute for Translational Neuroscience (SITraN) to develop a new type of neck support for people with MND (our reference: 928-794).

5 b (3)Designers, health professionals and engineers, along with people with MND, have developed a new support called the Sheffield Support Snood. The Snood is an adaptable neck collar, which can be modified to offer support where the wearer requires it most.

The Snood was initially tested in 26 people living with MND in 2014. The current stage of the project, called the Heads Up project, will evaluate the Snood in around 150 people. This will contribute towards providing the necessary wider consumer testing of the Snood, which in turn will help when looking for a commercial partner to take on the manufacture of this product. Continue reading

Respiratory support: the big debate on Symposium day 2

Different ways to support breathing were the main focus of the second clinical session on day two of the Symposium. Researchers from two MND Association funded studies presented their work looking at diaphragm pacing and also the withdrawal of ventilation support.

Lungs - Symp session pictureDiaphragm pacing

The NeuRx diaphragm pacing system (DPS) is a device developed to aid breathing by stimulating the large muscle that helps you to breathe – the diaphragm.

In 2011, the Food and Drug Agency (FDA) in the USA approved NeurRx DPS as a treatment for respiratory failure in motor neurone disease (MND). The treatment was not required to go through the series of clinical trials that is needed for a new drug. The FDA approved it on the basis of one small study because at the time the probable benefit to health outweighed the risk of using it.

Due to this lack of clinical evidence, this prompted further research in the USA and Europe to test its effectiveness on symptom management and survival. Continue reading

Heading in the right direction: Sheffield Support Snood update


Update (February 2017): All sites are now closed and not recruiting for participants.

If you would like to be added to a waiting list for the Sheffield Support Snood, please contact Lise Sproson.


We are funding, together with the NIHR i4i (National Institute for Heath Research invention for innovation) programme, a research team in Sheffield who have developed a new type of neck support for people living with neck muscle weakness as a result of a neurological condition.

Designers, clinicians and engineers from University of Sheffield, Sheffield Hallam University, Devices for Dignity, Sheffield Teaching Hospital, Barnsley Hospital, and the Sheffield MND Research Advisory Group have worked together with people living with MND to develop the Sheffield Support Snood through an iterative design process.

The results from a small pilot study of the snood were presented at the International Symposium on ALS/MND in Brussels last year, where we reported on it.

5 b (3)

Next step – the 100 collars project

In September we attended the Sheffield Support Snood training day, run by Devices for Dignity, Sheffield Teaching Hospitals NHS Foundation Trust, and Dr. Christopher McDermott, a Clinician Scientist at the Sheffield Institute for Translational Neuroscience (SITraN) who is the Chief Investigator for the project . Continue reading

Disappointing news for diaphragm pacing in MND

Results from the UK clinical trial of diaphragm pacing in MND/ALS (known as DiPALS) were published online today in the journal Lancet Neurology.

DiPALS was the first randomised clinical trial of diaphragm pacing in MND and aimed to find out whether or not diaphragm pacing was beneficial when added to the current standard treatment of non-invasive ventilation (NIV), compared to NIV treatment alone.

The trial results unfortunately show that diaphragm pacing was not beneficial when used in addition to NIV, and was in fact harmful, with people using diaphragm pacing living on average 11 months shorter than those on NIV alone.

Continue reading

Heads up! The Sheffield Support Snood

5 b (3)During the second day of the symposium Association-funded researcher, Dr Chris McDermott, presented his highly anticipated research on a new neck support for people living with MND.

Our healthcare research aims to lead to better symptom management and support for people living with MND. We know that neck weakness is an extremely distressing problem in MND and it is very difficult as a clinician to treat this.

Dr Chris McDermott from the Sheffield Institute for Translational Neuroscience (SITraN) said that he wanted to address this problem by working with people living with MND to develop a solution.  Continue reading

Dr Chris McDermott talks about his research at our Annual Conference

This year’s Annual Conference research talk was given by Dr Chris McDermott and focused on his research at the Sheffield Institute for Translational Neuroscience (SiTraN). His talk, adequately named ‘Improving the care and evidence base for symptomatic care’, was a very personal and informative talk to all that attended.

Dr McDermott gave a brief introduction about how he became a neurologist and got involved with MND research. He then talked about non-invasive ventilation (NIV) and how, through healthcare research, they have already gained evidence that NIV increases survival and improves the quality of life for people with MND. After this evidence was obtained, the technique gained National Institute of Health and Clinical Excellence (NICE) approval and NIV is now a standard treatment for people with MND who experience respiratory weakness.

Dr McDermott also mentioned how a ‘cough assist machine’ can be used to help patients cough and get rid of secretions and dirt. Information from the literature suggested a reduction of hospital admissions, and infections, in the year following the use of a cough assist machine for other diseases. The results from Dr McDermott’s MND Association funded study, looking at a cough assist machine for people with MND are yet to be analysed.

The rest of Dr McDermott’s talk focused on his current diaphragm pacing trial (known as DiPALS) being part-funded by the MND Association.

DiPALS

Dr McDermott explained that diaphragm pacing is designed so that people with MND do not have to be on long-term ventilation units, as the remote unit can be carried around when in use. Diaphragm pacing is similar to that of a ‘pace maker’, but instead of the heart it stimulates the diaphragm using an electrical current.

A video was shown of how the instrument’s electrodes are placed onto the diaphragm muscle during a 30 minute key-hole surgery procedure. The pacing unit is then controlled by an external remote at present, but if trials are successful an internal unit could be developed.

Dr McDermott stressed that the mechanisms in which diaphragm pacing acts is not known at present but suggested that it may cause stronger contractions or restore co-ordinated breathing.

An American study of 106 people with MND who had advanced respiratory problems previously found that 81% of trial participants were still alive after one year. Dr McDermott went on to explain that this study had no control group to test whether the diaphragm pacing unit improves life over and above that of current standards of care. However, the American study did find diaphragm pacing to be safe.

The DiPALS study in the UK has been recruiting patients with MND since November 2011 and compares NIV alone (control group) and NIV plus diaphragm pacing. Dr McDermott’s study aims to see if there is a difference in survival between the two groups, whether there is an improvement to quality of life, whether it is less intrusive, and whether the treatment is cost-effective. If diaphragm pacing does show a difference, then this could lead to NICE approval and become standard NHS-provided care in the UK. Dr McDermott went on to say that even if the study is found not to be a viable treatment the trial has already importantly shown that people with MND can have a general anaesthetic.

As the study is ongoing the final results are not available. Results are due in autumn 2014.

Overall, it was great to have an update into Dr McDermott’s research which stimulated an abundance of questions from all those that attended, leaving delegates with a real insight into some of the healthcare research funded by the Association.

More information

If you’re interested in attending a future MND Association conference to hear the latest about MND research, look out for our announcement of our 2013 Spring Conferences. Dates and locations will be announced on our website www.mndassociation.org.

Diaphragm pacing trial information sheet

AGM and Annual Conference summary on our website: http://www.mndassociation.org/news-and-events/events/conferences/AGM+and+Annual+Conference+2012

Research we fund