New research: Gastrostomy has become safer for people with MND

Abdomen with gastrostomy tube being adjusted

Apr 2019: Analysis of the data from the CARE-MND platform has shown that gastrostomy is safer for people with MND than it was 30 years ago.

In about one third of cases, the first symptoms of MND will affect speech and swallowing. This is sometimes called bulbar onset MND. For these people, the symptoms can quickly affect quality of life and it can become difficult to maintain adequate nutrition.

Gastrostomy is the the surgical creation of an artificial opening into the stomach. Gastrostomy provides a way for people with bulbar onset MND to maintain their nutrition levels, but there are risks associated with it. Indeed, it was found in the 2000s that 25% of people who underwent a gastrostomy died within a month. Furthermore, it is difficult to conduct clinical trials to compare people with and without a gastrostomy, because it is not ethical to withold feeding.

Instead, a Scottish team including Euan MacDonald Centre scientists and clinical professionals has used the data from the Scottish MND register on the CARE-MND platform to compare recent survival rates after gastrostomy with those from 30 years ago. The team found that more people are now choosing to have a gastrostomy and that it has become significantly safer. Now, 10% of people with MND die within a month of the procedure; this is 2.8 times less likely than it was 30 years ago. The researchers attribute this improvement to better selection of patients for whom gastrostomy is suitable, better gastrostomy techniques and surgical methods.

Disappointingly there was no observed improvement in survival time from onset for people who underwent a gastrostomy. This is likely because there are many factors that affect survival time in people with MND, but it emphasises the need for new effective therapeutics.

This study illustrates well the usefulness of maintaining accurate records for a long period of time.

The study was funded by MND Scotland and has been published in the journal Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration.

Related links

Read the scientific article: Improved survival and 30-day mortality after gastrostomy in Scottish motor neurone disease patients: evidence from a national retrospective cohort study using STROBE criteria

CARE-MND website


Image credit: Martin Bowra/Getty Images.

This article was published on: Thursday, April 04, 2019