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Improving PEG Tube Management in ALS Patients Through Educational Pamphlets

Nguyen, M.; Penna, M.; Powell, M.; Pallapati, K.; Sharp, L.; Orengo, J. P.

2025-12-12 neurology
10.64898/2025.12.09.25336480 medRxiv
Show abstract

Patients with amyotrophic lateral sclerosis (ALS) often experience dysphagia, leading to malnutrition and weight loss. Percutaneous endoscopic gastrostomy (PEG) tubes help address these issues, but complications and limited patient education may diminish their benefits. This project evaluated the patient experience from an educational pamphlet created by a multi-disciplinary team at our academic centers ALS Clinic. The pamphlet was distributed at the time of PEG placement and covered tube function, maintenance, and troubleshooting. A retrospective survey compared the experiences of patients who received the pamphlet to a control group of patients who did not. Among 22 respondents, 45% received the pamphlet. Pamphlet users reported better preparedness (100% vs. 58%), confidence in PEG care (90% vs. 58%), and pre-placement education (90% vs. 42%). Overall satisfaction with the PEG tube was high (82%), although satisfaction with the placement process was lower (68%). These findings informed us that accessible educational interventions may improve patient outcomes and experiences in our ALS patient population.

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