Quality improvement in neurology: Amyotrophic Lateral Sclerosis Quality Measures

Amyotrophic lateral sclerosis (ALS) is a lethal, progressive neurodegenerative disease characterized by loss of motor neurons.1 Patients with ALS lose function in the limbs, speech, swallowing, and breathing muscles. The cause of the disease is still not known for most patients. Approximately 25,000 people in the United States have ALS, and 5,000 people are diagnosed with ALS annually in the United States.1 Most patients die from respiratory failure 2 to 5 years after onset of symptoms. Cognitive dysfunction is seen in 20% to 50% of patients.2 The disease burden for patients and caregivers is enormous. The average cost of care has been estimated at $50,000 per patient per year.3 The authors would like to thank all the ALS Measure Development Work Group members for their contributions and work that supported the development of this manuscript: Robert G. Miller, MD (neurology); Benjamin Rix Brooks, MD (neurology); Steven Ringel, MD (neurology); Hiroshi Mitsumoto, MD (neurology); Carlayne Jackson, MD (neurology); Christen Shoesmith, MD, BSc (neurology); Edward Kasarskis, MD, PhD (neurology); Robert C. Basner, MD (pulmonology); Nicholas Procaccini, MD (gastroenterology); Gregory Carter, MD (physical medicine and rehabilitation); Dallas Forshew, RN, BSN (nursing); Mohammed Sanjak, PhD, PT, MBA (physical therapy/occupational therapy); Pat Casey, MS, CRCC (physical therapy/occupational therapy); Bob Osborne, RN (hospice/palliative care); Valerie Cwik, MD (Muscular Dystrophy Association); Christine Jasch, OTR/L (patient representative); Fredrik Tolin, MD, MBA (Humana); Rebecca J. Swain-Eng, MS, CAE (AAN staff); Gina Gjorvad (AAN staff); Rebecca Kresowik (methodologist); Richard Dubinsky, MD (facilitator); Joel Kaufman, MD (facilitator); Adam Cohen, MD (facilitator); Christopher Bever, MD (AAN QMR); Eric Cheng, MD, MS (AAN QMR). The authors would also like to thank the Muscular Dystrophy Association for their support in the development of the measures.