Friday saw the highly anticipated publication of results from the ProGas study, which was part-funded by the MND Association.
I manage the publication of evidence-based information resources for health and social care professionals at the MND Association. I can’t recall a time when I’ve felt so much pressure to delay publishing a resource due to emerging findings.
Led by Dr Christopher McDermott at the Sheffield Institute for Translational Neuroscience (SITraN), the ProGas study aimed to gain evidence on the most appropriate method and timing of gastrostomy in people living with MND in the UK. It was the first large-scale, nationwide investigation on this topic, gathering data from 323 people living with MND.
As a number of MND care centres were included in the 24 centres involved in the research, we had started to receive hints some time ago that changes may be afoot. Without giving too much away, some of the professionals involved in the review of our resources suggested we may want to wait before publishing anything too specific on the methods and timing of gastrostomy. And so the intrigue – and the waiting – began.
Around the MND Association, the name ProGas took on an air of mystery and suspense. We knew something was coming… but information was on a ‘need to know’ basis for a privileged few. The ears of research colleagues rang with the refrain ‘Any news on ProGas?’. And as more information trickled through, it became clear that this study was one with real potential to change practice.
Some time after initial findings were presented at the 25th International Symposium on ALS/MND in December 2014, we received news that the completed paper had been accepted for publication in the Lancet Neurology.
Now the wait is over, the published paper provides the evidence to show that early nutritional management is critical for MND survival.
The results support recommendations from the European Federation of Neurological Societies (EFNS) that people with MND benefit most from enteral feeding when they have lost less than 10 per cent weight before the intervention.
However, because significant weight loss before gastrostomy is associated with shorter survival, the investigators go a step further to recommend enteral feeding as early as possible at five per cent weight loss from MND diagnosis.
Of the three types of gastrostomy used in MND, PEG was found to be the preferred method, when good respiratory function allows the person to lie flat and be sedated for the procedure. PIG is preferred when there is respiratory risk. Although all three methods were found to be as safe as each other with respect to procedural risk, PEG and PIG seemed to offer easier post-insertion tube management than RIG.
The team behind the study is now aiming towards better understanding of the specific nutritional requirements of people with MND, in particular the quantity and quality of nutritional support needed after gastrostomy. The results will also be used to develop specific guidance on the use of gastrostomy in MND, to improve consistency of practice across MND clinics. The investigators’ conclusions will also be presented to NICE, which is currently working on clinical guidelines for the assessment and management of MND.
In the meantime, this research will be one of the sources used to shape our information for professionals. Although the main impact will, of course, be seen in outcomes for people with MND, it has been a lesson in how research can – and should – form the basis of the information we share with both people with MND and health and social care professionals.
Read the full research paper on the Lancet website.
The Progas Study Group. Gastrostomy in patients with amyotrophic lateral sclerosis (ProGas): a prospective cohort study. Lancet Neurology 29 May 2015.
The ProGas study was supported jointly by the Motor Neurone Disease Association of England, Wales and Northern Ireland and the Sheffield Institute for Translational Neuroscience at the University of Sheffield.