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S Voiculescu, MJ Elmo, R Onders
Case Western Reserve University School of Medicine

Amyotrophic lateral sclerosis (ALS) is a progressive neurologic disease with dysphagia as one of the most consequential symptoms, ultimately affecting the majority of patients. Data suggests there is a correlation between a patientís weight and survival however, only 43% of patients who were recommended a percutaneous endoscopic gastrostomy tube (PEG) chose it. One of the top reasons for declining is aesthetics. The 30-day mortality for PEG placement when forced vital capacity (FVC) is below 50% is reported as high as 25%. The low profile gastrostomy tube (button) has been available for over 30 years. Patients preference and feasibility of primary button gastrostomy insertion in ALS patients has not been previously been reported.

Subgroup analysis of a prospective database at a single site of all ALS patients who were being evaluated for gastrostomy tube. Patients were offered a choice between standard PEG and button. The pros/cons of each were reviewed.

Between 2011 and 2019, 209 patients were evaluated. Whilst 30 patients had a PEG prior to their evaluation and 10 had converted to a low-profile button during this period, 118 patients underwent initial gastrostomy placement, 115 underwent low profile button, and only 3 received the standard PEG. Patients that chose the button ranged in age from 28-81 years with an average age of 57. The average FVC was 56% predicted (17%-110%), 32% of patients undergoing PEG had FVC greater than 60%, and 42% of patients had FVC below 50%. After two months, two patients required conversion to standard PEG due to body habitus. Two patients had button dislodgment within the first two months. No early gastrostomy-related mortalities.

When given a choice, patients overwhelmingly selected the button, preferring its aesthetics. Button placement is safe and has a very low complication rate. The dislodgement rate is 2%, fitting within the standard PEG dislodgment rate of 1-13.4%. Offering direct button placement could affect ALS patientís acceptance of a feeding tube earlier allowing for placement at a safer stage of their disease and a mechanism to provide necessary nutrition before weight loss occurs.

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