|Sponsor||Royal Free London NHS Foundation Trust|
|Funder||Motor Neurone Disease Association / South Yorkshire CLRN|
|CI||Dr Richard Orrell|
|UK sites||London Queen square|
More information one and two
Difficulty in swallowing is a common problem in patients
Patients with severe swallowing difficulty experience:
- increased risk of chest infections
Patients with severe swallowing difficulty rely on gastrostomy* for
long-term nutritional support.
However, the current practice of gastrostomy feeding is
largely based on consensus and expert opinion rather than the results of
appropriately designed trials.
Currently gastrostomy technique and timing of
insertion within the disease course vary throughout the UK.
There is no
evidence to suggest what the optimal timing for gastrostomy is, or which method
is most appropriate.
In addition, although gastrostomy is routinely performed, the benefits, such as improved survival and quality of life following gastrostomy, have not been proven.
Primary objective: to develop evidence-based guidelines for gastrostomy use in patients with MND.
Patients and carers were recruited at the participating MND
Centres around the UK. Questionnaires were used to assess the safety,
complications and benefits of different timings and methods of gastrostomy
The results of this work will be used to develop guidelines for optimal benefit, and patient /carer experience of gastrostomy. The principles will be readily applicable to patients with severe swallowing problems due to other neurological diseases.
*[Gastrostomy consists of a feeding tube directly placed into the stomach.]