Skip to main page content
U.S. flag

An official website of the United States government

Dot gov

The .gov means it’s official.
Federal government websites often end in .gov or .mil. Before sharing sensitive information, make sure you’re on a federal government site.

Https

The site is secure.
The https:// ensures that you are connecting to the official website and that any information you provide is encrypted and transmitted securely.

Access keys NCBI Homepage MyNCBI Homepage Main Content Main Navigation
Observational Study
. 2025 Jun;40(3):623-629.
doi: 10.1002/ncp.11290. Epub 2025 Mar 18.

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

Kay Tran  1 , Heather A Hayes  2 , Mark Bromberg  1
Affiliations
Observational Study

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

Kay Tran et al. Nutr Clin Pract. 2025 Jun.

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/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).

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.

Keywords: ALS; amyotrophic lateral sclerosis; decision‐making; feeding tube; gastrostomy, PEG; percutaneous endoscopic gastrostomy.

PubMed Disclaimer

Conflict of interest statement

None declared.

Figures

Figure 1
Figure 1
Assessment of potential barriers identified by patients before receiving a gastrostomy tube.
Figure 2
Figure 2
Assessment of factors that have influenced individuals' decision‐making after receiving a gastrostomy tube.
Figure 3
Figure 3
Satisfaction with their decision after receiving a gastrostomy tube.
Figure 4
Figure 4
Benefits gained from their decision to receive a gastrostomy tube.
See this image and copyright information in PMC

Similar articles

See all similar articles

References

    1. Kellogg J, Bottman L, Arra EJ, Selkirk SM, Kozlowski F. Nutrition management methods effective in increasing weight, survival time and functional status in ALS patients: a systematic review. Amyotroph Lateral Scler Frontotemporal Degener. 2018;19(1‐2):7‐11. - PubMed
    1. Brent JR, Franz CK, Coleman, 3rd JM , Ajroud‐Driss S. ALS. Neurol Clin. 2020;38(3):565‐575. - PMC - PubMed
    1. Bouteloup C, Desport JC, Clavelou P, et al. Hypermetabolism in ALS patients: an early and persistent phenomenon. J Neurol. 2009;256(8):1236‐1242. - PubMed
    1. Steyn FJ, Ioannides ZA, van Eijk RPA, et al. Hypermetabolism in ALS is associated with greater functional decline and shorter survival. J Neurol Neurosurg Psychiatry. 2018;89(10):1016‐1023. - PMC - PubMed
    1. Barć K, Kuźma‐Kozakiewicz M. Gastrostomy and mechanical ventilation in amyotrophic lateral sclerosis: how best to support the decision‐making process? Neurol Neurochir Pol. 2020;54(5):366‐377. - PubMed

Publication types