Nutrition with gastrostomy feeding tubes for amyotrophic lateral sclerosis in Canada

Abstract

Background: Amyotrophic lateral sclerosis (ALS) is a rapidly progressing degenerative motor neuron disease that results in significant muscle weakness. Defects in energy metabolism and difficulties in swallowing eventually lead to a reduction in body mass. Weight loss exacerbates symptoms and serves as an independent negative prognostic factor. Percutaneous endoscopic gastrostomy (PEG) is often inserted in patients with ALS to either supplement or replace oral feeding. However, the criteria for PEG placement and timing of insertion are important clinical decisions that have not been fully studied. Given the absence of guiding evidence, the aim of this project was to better understand how Canadian ALS clinics make decisions regarding gastrostomy feeding. Methods: ALS clinical directors across Canada were asked if they had written guidelines for timing of PEG insertion and if not, what criteria they use to make this decision. Responses from 10 of 17 centres contacted were received. Results: The approach to supplemental nutrition management in Canadian clinics varies in the absence of formal guidelines. Only one centre has a written set of centre-specific protocols in place. Most clinics considered some combination of respiratory decline, weight loss, dysphagia and/or patient readiness when reaching a decision. However, the absolute threshold and mechanism of measuring the individual criteria differed between clinics. Conclusions: Practices generally reflect international published recommendations but vary on the emphasis of specific criteria. Further research is required to determine the optimal timing and criteria to place gastrostomy feeding tubes in the ALS population.