The effect of the percutaneous endoscopic gastrostomy (PEG) tube placement on the quality-of-life of ALS patients and their caregivers

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Conference Proceeding

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Amyotroph Lateral Scler Frontotemporal Degener


Background: Dysphagia is one of the most important complications, together with respiratory insufficiency, encountered in ALS. The presence of dysphagia exposes patients to malnutrition, dehydration and aspiration pneumonia. Because of this, most ALS patients have a Percutaneous Endoscopic Gastrostomy (PEG) placed (1,2). It remains unclear how this procedure impacts the quality-of-life (QoL) of ALS patients and their caregivers (3). Objectives: The objective of this prospective qualitative study is to determine how the placement of a PEG tube effects the QoL of ALS patients and their caregivers. Results: In total, 14 patients and their caregivers participated. Measurements were taken prior to PEG placement and at weeks 4 and 12 after placement: Assessment included Hospital Anxiety and Depression Score (HADS) (patient and caregiver), caregiver burden scale (CBS, caregivers) and SWAL-QoL (patients). Paired t-tests and signed rank tests were utilized to compare the measures between the different time points. The overall testing level was set at 0.05, with no adjustments for multiple testing. SAS 9.4 was used to perform all data analyses. Analysis was performed of available responses. Patients and caregivers had no significant change of anxiety or depression scores between the different time points as measured by HADS. There was a significant increase in caregiver burden between week 4 and week 12 (p=0.004), as measured by the CBS. The comparisons between baseline and the other 2 time points showed no significant changes. Patient's general health as measured by Swallowing-Quality-of-Life (SWAL-QoL) decreased significantly between weeks 4 and 12 (p=0.031). However, no other measures within the SWAL-QoL were significant at the 0.05 level. Discussion and conclusions: This pilot study shows that it is feasible to assess patients and their caregivers' quality-of-life and caregiver burden during the time of PEG placement. Findings suggest that patients and their caregivers adjust well to PEG placement, as there is no significant difference in anxiety and depression in patients or caregivers after PEG placement. PEG placement may not have any benefits on the quality-of-life issues related to dysphagia; however, caregivers reported a significant increase in caregiver burden after placement. More extensive studies are required to assess the true impact of dysphagia and placement of nutritional devices.




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