The value of multidisciplinary clinics for persons with ALS has been demonstrated in several studies, showing longer survival, better quality of life, and greater access to therapies for patients with this disease. 4 That publication was updated in 2009 to include some important advances demonstrating the value of new treatment options such as multidisciplinary clinics, riluzole, noninvasive ventilation, enteral feeding, and symptomatic treatments for pseudobulbar affect and sialorrhea. In 1999, the American Academy of Neurology (AAN) published an evidence-based practice parameter for managing patients with ALS, including recommendations for the only disease-modifying drug, riluzole, which modestly lengthens survival. 3ĪLS is not curable, but a number of important therapies are now available. The average cost of care has been estimated at $50,000 per patient per year. 2 The disease burden for patients and caregivers is enormous. Cognitive dysfunction is seen in 20% to 50% of patients. 1 Most patients die from respiratory failure 2 to 5 years after onset of symptoms. Approximately 25,000 people in the United States have ALS, and 5,000 people are diagnosed with ALS annually in the United States. The cause of the disease is still not known for most patients. 1 Patients with ALS lose function in the limbs, speech, swallowing, and breathing muscles. Luke's Rehabilitation Institute (G.T.C.), Spokane, WA Department of Neurology (P.C.), Northwestern Medical Faculty Foundation, Chicago, IL Massachusetts General Hospital and Harvard Medical School (A.B.C.), Boston, MA Department of Neurology (R.D.), University of Kansas, Kansas City, KS Department of Neurology (C.E.J.), University of Texas Health Science Center, San Antonio, TX Department of Neurology (E.K.), University of Kentucky, Lexington, KY Swedish Medical Center and University of Washington (N.J.P.), Seattle, WA and Humana (F.P.T.), Chicago, IL.Īmyotrophic lateral sclerosis (ALS) is a lethal, progressive neurodegenerative disease characterized by loss of motor neurons. From the Forbes Norris MDA/ALS Research Center (R.G.M., D.F.), California Pacific Medical Center, San Francisco, CA Carolinas Neuromuscular/ALS-MDA Center, Carolinas HealthCare System and Departments of Neurology (B.R.B., M.S.) and Kinesiology (M.S.), Carolinas Medical Center, University of North Carolina School of Medicine-Charlotte Campus, Charlotte, NC American Academy of Neurology (R.J.S.-E.), Minneapolis, MN Division of Pulmonary Medicine (R.C.B.), Columbia University College of Physicians and Surgeons, New York, NY St.
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