Queen Square Centre for Neuromuscular Diseases


PROGAS - Prospective evaluation of gastrostomy in MND

SponsorRoyal Free London NHS Foundation Trust
FunderMotor Neurone Disease Association / South Yorkshire CLRN
CIDr Richard Orrell
UK sitesLondon Queen square
Contact detailsr.orrell@ucl.ac.uk

Difficulty in swallowing is a common problem in patients with MND.

Patients with severe swallowing difficulty experience:

  • malnutrition
  • dehydration
  • choking
  • 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 insertion.

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.]