O16 Gastrostomy placement in MND: the impact of weight loss and respiratory compromise
Published Date: 19th June 2022
Publication Authors: Roberts S, Theis V, Clark K
Introduction
Motor neurone disease (MND) is a neurodegenerative condition causing progressive deterioration of muscle weakness that affects breathing, movement and swallowing. The Progas study1 is the largest study in recent years focussing on nutrition in MND, demonstrating that 30 day mortality post PEG (percutaneous endoscopic gastrostomy) insertion was 10.7 times higher in those with >10% weight loss and risk of complications and mortality significantly increased when FVC was <50%. Radiologically inserted gastrostomies (RIGs) had more post procedure complications than PEGs and patients found PEG placement more distressing than RIGs/Per Oral Image Guided Gastrostomies (PIGs). A local review was therefore done to consider local outcomes in light of this study.
Methods
9 patients with MND were referred for gastrostomy tubes between December 2017 and November 2020 in a DGH. A retrospective review took place relating to 30 day mortality, overall mortality and post procedure complications.
Results
1 patient had a RIG, 7 patients had a PEG and 1 patient with 24% weight loss and respiratory compromise declined gastrostomy tube insertion and opted for a long term nasogastric tube (survived <3 months). 8 patients had gastrostomy tubes placed: 2 died <30 days (one of whom had a RIG, these both had >30% weight loss pre-diagnosis and significant respiratory compromise), 2 died between 1–3 months (both had >10% weight loss and significant respiratory dysfunction), 1 died between 9–12 months (16.3% weight loss but no respiratory issues), 2 survived >1year (both had <12% weight loss and no respiratory compromise). 1 patient is still alive (no weight loss and no respiratory compromise). Of those that survived >3 months, all had MDT meetings involving nutrition support nurse. However only 1 in 4 patients that died at <3 months had an MDT meeting or nutrition support nurse involvement.
Conclusion
This small study supports the evidence provided by Progas. No patients in this study with respiratory compromise survived >3 months and a higher degree of weight loss was associated with a poorer prognosis. The General Medical Council (GMC) is clear that a well-established risk of serious adverse outcome must be discussed to obtain consent.2 3 Given the high risk of mortality for those with >10% weight loss and respiratory compromise, it is important that patients are appropriately informed of the increased risks so that they can provide informed consent. Patients may choose to refuse a gastrostomy tube insertion and to continue oral intake or may prefer longer term nasogastric tube feeding providing community services can support this. Many feeding decisions are still made too late into patients’ disease process, and whilst this may be due to delayed diagnosis, it is important to educate health care professionals to refer for feeding tubes early in patient’s disease process to enable best outcomes. In the above series, 3 out of 4 of those that died <3 months did not have an MDT discussion. It is therefore vital that MND patients considering a gastrostomy have specialist nutrition involvement to improve patient decision making and outcomes.
References
- Progas Study Group. Gastrostomy in patents with amyotrophic lateral sclerosis (ProGas): a prospective cohort study. The Lancet Neurology 2015;14:702–709.
- General Medical Council, 2008. Consent: patients and doctors making decisions together. [Online] Available from: https://www.gmc-uk.org/static/documents/content/Consent_-_English_0617.pdf
- Montgomery v Lanarkshire Health Board [2015] SC 11 [2015] 1 AC 1430.
Roberts, S; Theis, V; Clark, K. (2022). O16 Gastrostomy placement in MND: the impact of weight loss and respiratory compromise. GUT. 71(Suppl 1), p.A9. [Online]. Available at: https://gut.bmj.com/content/71/Suppl_1/A9.1 [Accessed 16 September 2022]
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