Practice Parameter: The Care of the Patient with Amyotrophic Lateral Sclerosis (An Evidence-Based Review): Report of the Quality Standards Subcommittee of the American Academy of Neurology
1999; SAGE Publishing; Volume: 13; Issue: 2 Linguagem: Inglês
10.1177/154596839901300202
ISSN1552-6844
AutoresRobert G. Miller, J. Rosenberg, Deborah E. Gelinas, Hiroshi Mitsumoto, Daniel S. Newman, Robert Sufit, Gian Domenico Borasio, Walter G. Bradley, Mark B. Bromberg, Benjamin Rix Brooks, Edward J. Kasarskis, Theodore L. Munsat, Edward Anthony Oppenheimer,
Tópico(s)Dysphagia Assessment and Management
ResumoMission statement. The Quality Standards Subcommittee (QSS) of the American Academy of Neurology (AAN) is charged with developing practice parameters for physicians. This evidence-based review addresses some of the major management issues in patients with ALS, and highlights the many areas in which more research is needed. ALS is a progressive, degenerative motor neuron disease of unknown cause. Muscle atrophy and spasticity in limb and bulbar muscles result in weakness and loss of ambulation, oropharyngeal dysfunction, weight loss, and ultimately respiratory failure. Although advances in understanding the pathophysiology of ALS have stimulated the development of new drug therapies,1 the mainstay of treatment for ALS patients remains symptomatic management. The practice parameters presented here comprise the first recommendations for the management of ALS based on a prescribed review and analysis of the peer-reviewed literature. These practice parameters were developed to improve the care and the quality of life of people with ALS by providing a rational basis for managing the disease. A multidisciplinary task force, all with extensive ALS experience, included 19 physicians, 3 patients with ALS, 1 gastroenterologist, 1 pulmonologist, 1 occupational therapist whose mother has ALS, and 1 nurse. In addition, consultants with expertise on ethics, practice parameter development, and medical library research participated in the process. The task force agreed to investigate five areas: 1) informing the patient and the family about the diagnosis and prognosis (also called “breaking the news”) of ALS; 2) symptomatic treatment; 3) nutrition, and decisions about percutaneous endoscopic gastroscopy (PEG); 4) respiratory insufficiency and mechanical ventilation; and 5) advance directives and palliative care. To help achieve this goal, they developed several guiding principles or attributes of care: Principles of ALS management
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