Percutaneous endoscopic gastrostomy (PEG) in patients with ALS and bulbar dysfunction
Center for Outcomes Research
Amyotrophic Lateral Sclerosis; Bulbar Palsy, Progressive; Databases as Topic; Disability Evaluation; Endoscopy; Enteral Nutrition; Female; Follow-Up Studies; Gastrostomy; Health Care Surveys; Home Care Services; Humans; Male; Middle Aged; Survival Rate; Treatment Outcome
Health Services Research
OBJECTIVE: To compare characteristics of ALS patients with and without percutaneous endoscopic gastrostomy (PEG).
METHODS: Using the ALS Patient Care Database, data from patients with and without PEG with ALS Functional Rating Scale-bulbar subscale (ALSFRSb) scores < or = 5 were analyzed; follow-up data were also collected.
RESULTS: PEG use was markedly increased with declining ALSFRSb scores. Demographics did not differ, but ALSFRS composite scores and bulbar and arm subscale scores were lower (P<0.0001). PEG patients used significantly more assistive devices, multidisciplinary care, home care nurses and aides, had more frequent physician and emergency department visits and hospital admissions (P<0.0001), and had lower health status based on the mini-SIP scale (P=0.0047). PEG use varied greatly between ALS centers. In the follow-up study, positive impact of PEG was noted in 79 % of PEG patients but in only 37.5% of patients who received PEG later, based on a small number of patients. PEG use showed no survival benefit.
CONCLUSION: Patients did not receive PEG until bulbar function was severely reduced and overall ALS had markedly progressed. PEG may have been performed too late to demonstrate survival benefits. Aggressive proactive nutritional management appears essential in patients with ALS. To determine whether PEG provides benefits, it must be performed at earlier stages of the disease and prospectively studied.
Amyotroph Lateral Scler Other Motor Neuron Disord. 2003 Sep;4(3):177-85.
Amyotrophic lateral sclerosis and other motor neuron disorders : official publication of the World Federation of Neurology, Research Group on Motor Neuron Diseases
Mitsumoto H, Davidson MC, Moore D, Gad N, Brandis M, Ringel S, Rosenfeld J, Shefner JM, Strong MJ, Sufit R, Anderson FA. (2003). Percutaneous endoscopic gastrostomy (PEG) in patients with ALS and bulbar dysfunction. ALS C.A.R.E. Publications. Retrieved from https://escholarship.umassmed.edu/cor_als/4