A prospective observational study of decision‐making by patients with amyotrophic lateral sclerosis upon recommendation for PEG enteral feeding tubes

TL;DR

This study explores how patients with amyotrophic lateral sclerosis make decisions about feeding tubes and finds high satisfaction after placement despite initial concerns.

Contribution

The study provides new insights into patient decision-making and satisfaction related to gastrostomy tube placement in amyotrophic lateral sclerosis.

Findings

High patient satisfaction (93%) was reported after gastrostomy tube placement.

Common concerns included pain/infection (48%) and limitations on activities (44%).

Average time to placement after recommendation was 145 days.

Abstract

To understand challenges surrounding acceptance of a percutaneous endoscopic gastroscopic enteral feeding tube by patients with amyotrophic lateral sclerosis: a prospective observational study.

This was a prospective observational study of 41 patients and care partners attending a multidisciplinary Motor Neuron Disease clinic. Surveys were administered pregastrostomy tube placement (N = 23) and postplacement (N = 41). Some were not available both pre‐ and postplacement). For preplacement, we queried barriers affecting their decision for receiving a gastrostomy tube at the time of recommendation. For postplacement, we queried factors that influenced their decision as well as perceived benefit and satisfaction with use.

Patient concerns about receiving a gastrostomy tube centered on the procedure, possible pain/infection (48%), limitations on activities (44%), impact on body image, and possible extension of life. For patients who received a gastrostomy tube, satisfaction was very high (93%), and there was reduced patient (59%) and care partners (54%) stress. The average BMI was 28.6 kg/m2 at diagnosis, and there was no net gain in weight. The average time until placement of a gastrostomy tube following recommendation was 145 days (range 13–824 days).

Despite counseling at multiple time points, the decision to obtain a feeding tube is often challenging for patients and care partners. Gastrostomy tube placement was perceived as a substantial benefit. Addressing these barriers may reduce concerns and promote earlier decision‐making to maximize the benefits of placing a gastrostomy tube sooner.

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