Work

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

Year: 2025

Type: article

Abstract: Objective To understand challenges surrounding acceptance of a percutaneous endoscopic gastroscopic enteral feeding tube by patients with amyotrophic lateral sclerosis: a prospective observational study. Methods 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. Results 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/m 2 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). Conclusions 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.

Source: Nutrition in Clinical Practice

DOI: 10.1002/ncp.11290

Authors: Kay Tran, Heather A. Hayes, Mark Bromberg

Institution: University of Utah

Language: English

Topic: Clinical Nutrition and Gastroenterology

Subfield: Nutrition and Dietetics

Field: Nursing

Domain: Health Sciences

SDG: Good health and well-being

Open Access status: hybrid

Estimated APC paid: $3,570