Frequency, timing and outcome of gastrostomy tubes for amyotrophic lateral sclerosis/motor neurone disease

Abstract

We found that gastrostomy feeding tubes are being inserted more frequently in people with ALS/MND. An unexpectedly high early mortality was detected which probably reflects a lack of selection bias compared with previously published data. It is possible that changes in the practice of gastrostomy placement since 1998 result in better outcomes for patients with ALS/MND. Prospective studies are required to assess the risks and benefits of enteral nutrition in ALS/MND.

Practice Parameter update: The care of the patient with amyotrophic lateral sclerosis: Drug, nutritional, and respiratory therapies (an evidence-based review)

“…However, 4 Class III studies failed to find a significant survival benefit with PEG. 19,21,23,26 All but one 26 of the negative studies included patients not needing PEG as a control group. The positive studies used controls that refused PEG (Class II) 17,20 or used a risk model and multivariate analysis based on factors that predicted survival (statistically controlling for confounders) (Class III).…”

The management of amyotrophic lateral sclerosis

“…Advantages include improved nutrition and increased BMI [59], although the survival effect is likely to be marginal [60,61]. Morbidity relating to PEG placement increases with worsening respiratory function.…”

Accepting or declining non-invasive ventilation or gastrostomy in amyotrophic lateral sclerosis: patients’ perspectives

“…In quantitative studies, factors found to affect decisionmaking by pwALS in terms of NIV (and ventilation more generally) and gastrostomy include disease characteristics such as severity of symptoms [17]; demographic factors such as gender, age, educational level and IQ; and various psychological characteristics such as health beliefs, understanding of the illness, attachment to life, religiosity and mood (see [17][18][19][20][21][22][23]) as well as carer-rated everyday behavioural change indicative of executive dysfunction [17]. It has also been found that pwALS who indicate possible acceptance of NIV and gastrostomy early on in the disease trajectory are more likely to abide by their initial decision [24][25].…”