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A multi-centre evaluation of the post-gastrostomy management in patients with motor neurone disease (PostGas)

Motor neurone disease (MND) is a devastating terminal illness, causing a progressive weakness of muscles controlling movement, swallowing and breathing. Malnutrition and weight loss in patients with motor neurone disease (pwMND) are associated with increased disability and shortened survival, especially for those experiencing swallowing difficulties. Long-term nutritional support for patients with severe swallowing problems can be achieved by placing a feeding tube, known as a PEG, RIG, PIG, g-tube or gastrostomy, directly into the stomach.

Evidence from the team's previous research suggested the optimal method, and timing for, gastrostomy insertion in pwMND; however, there is lack of evidence to indicate the optimal ways for the nutritional management of patients, following gastrostomy insertion. This may explain the worrying finding we (and other studies) identified; that the majority of patients continue to lose weight or make insignificant gains in weight, in the first 3 months following gastrostomy insertion.

The aim of this study is to understand the reasons behind the poor nutritional outcomes following gastrostomy in the majority of pwMND and provide evidence-based recommendations for the nutritional management of this patient group. The PostGas study team, based in Sheffield, plan to observe a group of 200 patients who have undergone gastrostomy in 22 MND care centres and clinics in the UK. Each participant, depending on disease progression, will take part in the study for 9 months following gastrostomy. The team will prospectively collect information about the different post-gastrostomy nutritional approaches and their effectiveness on the nutritional state of patients with motor neurone disease. The team will measure the nutritional outcome for patients (in terms of weight percentage, body mass index and lean body mass variation at 3, 6 and 9 months following gastrostomy and identify factors that may influence this outcome. Assessments will include measurements of weight, height, upper arm length and skin thickness; and the completion of a short questionnaire booklet.

The Royal Preston Hospital was a study centre, with Professor Chhetri as the local PI.

 

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