title: Improving the quality of life for people with ALS: the challenge ahead.
abstract: In tandem with recent progress in basic and clinical research in amyotrophic lateral sclerosis (ALS), clinical care and management has improved substantially. Key processes and practices have been established and are specified in current ALS Practice Parameters; the international ALS databases identify the current status of care and management given by physicians. A number of prospective clinical management research studies are now well underway to establish the effective utility of enteral feeding, assistive ventilatory device, and exercise in patients with ALS. One of the main research objectives in the clinical management of ALS is to improve patients' quality of life. For patients with ALS, only comprehensive multidisciplinary care can effectively improve their overall quality of life from diagnosis to death. This paper will briefly review a number of factors that must be considered if we are to improve the quality of life for these patients, including comprehensive medical management, patient education, the importance of hope, the role of the health care professional, and the patients themselves.
authors.affiliation: Eleanor & Lou Gehrig MDA/ALS Center, Columbia-Presbyterian Medical Center, New York, NY 10032, USA.
authors.forename: H
authors.initials: H
authors.lastname: Mitsumoto
authors.forename: M
authors.initials: M
authors.lastname: Del Bene
mesh_terms: D001294:Attitude to Health; D017028:Caregivers; D004750:Enteral Nutrition; D015444:Exercise; D005190:Family; D017051:Hospice Care; D006801:Humans; D016472:Motor Neuron Disease / Q000523:psychology / Q000534:rehabilitation / Q000628:therapy*; D010348:Patient Care Team; D011788:Quality of Life