Amyotrophic Lateral Sclerosis Quality Measurement Set 2022 Update: Quality Improvement in Neurology

Abstract

The estimated prevalence of amyotrophic lateral sclerosis (ALS) is approximately 5.2-7.9 people per 100,000 in the United States,1,2 with a worldwide ALS estimate of 4.42 per 1,000,000 population.3 Patients with ALS have progressive arm and leg weakness, speech, swallowing, and respiratory impairments, and frequent cognitive/behavioral dysfunction. Median tracheostomy-free survival from onset of weakness is 34.7 months, but progression rates vary substantially between individuals.4 Although pharmacologic treatment options remain limited, judicious use of noninvasive ventilation, adequate nutritional support, and multidisciplinary care serve as the background for a landscape that continues to evolve with increasing availability of neuroprotective treatments and targeted genetic therapies on both a clinical5 and research basis.6,7.