MSA researchers wish to gather evidence about the use of feeding tubes in MSA.
They invite people diagnosed with MSA to complete this short, 9 question online survey about swallowing issues and feeding tubes.
Impaired swallowing (known as dysphagia) is a feature of MSA which can develop during MSA. On average dysphagia is moderately serious after 5 years or so.
Aspiration pneumonia – food and liquids going into the lungs instead of the stomach – can occur as the problem gets worse. And that is why in some cases patients may undergo a procedure known as a PEG – Percutaneous Endoscopic Gastrostomy. A tube is fitted which passes through the abdomen straight into the stomach through which food and liquids can be passed. Without it, patients can become malnourished and dehydrated. Gastrostomies may be called for in a number of other neurological and non-neurological conditions including Parkinson’s and Motor Neurone Disease. But in MSA a body of evidence for when and how PEGs should be employed and what the outcomes are likely to be in terms of effective disease management and quality of life has not yet been built up.
This project intends to address that and gather evidence for the role, safety and timing of gastrostomy insertion in MSA. We would like to hear from patients, carers and family members who are willing in contributing their detailed experiences and insights into swallowing impairments and their experience with devices such as gastrostomies. Please join us for a conversation on the use of gastrostomy in MSA as we want to explore patient preference and experiences with regards to discussion and advanced planning around swallowing, nutrition, and gastrostomies. The aim of this will be to try to understand when patients feel is best to approach these topics and the way it should be done, whilst recognising the importance of individual circumstances as well as looking at the impact of gastrostomy insertion on quality of life in MSA patients and carers. To join us, please use the link below:
https://de.surveymonkey.com/r/F6X29N6
Thank you for all your help and support with our research!
Dr Viorica Chelban
UCL Queen Square Institute of Neurology