| HOME | HELP | FEEDBACK | SUBSCRIPTIONS | ARCHIVE | SEARCH | TABLE OF CONTENTS |
|
|
|
|||||||
|
|||||||||
From the Departments of Neurology, University of Miami (Dr. Bradley), FL; University of Utah (Dr. Bromberg), Salt Lake City; West Virginia University (Dr. Gutmann), Morgantown; Baylor College of Medicine (Dr. Harati), Houston, TX; University of Kentucky (Dr. Ross), Lexington; and California Pacific Medical Center (Dr. Miller), San Francisco, CA; and the Center for Outcomes Research, University of Massachusetts Medical School (Dr. Anderson), Worcester.
Address correspondence and reprint requests to Dr. Walter Bradley, University of Miami School of Medicine, Department of Neurology (M740), Miami, FL 33101; e-mail: wbradley{at}med.miami.edu
Background:— The American Academy of Neurology (AAN) ALS Practice Parameter was published in April 1999. The ALS CARE Database has been collecting data on the management of patients with ALS in North America since 1996.
Objective:— To compare the management of patients with ALS in North America as recorded in the ALS CARE Database with the recommendations of the AAN ALS Practice Parameter. Methods: Data were analyzed from 2018 patients at enrollment and from 373 of these patients who died between enrollment and May 1999.
Results:— Eighty-two percent of the enrolled patients reported that they had been given enough information about ALS. Only 54% of patients with drooling were receiving medication for this problem. Only 41% of those who reported being depressed most of the time were receiving antidepressant medications. Only 28% of those with dyspnea and only 9.2% of those with a forced vital capacity <40% predicted were receiving noninvasive positive pressure ventilator support. Only 30% of those with moderate to severe dysphagia had a gastrostomy tube. Half of the patients who died did so at home, but only 47% of them received residential hospice services. Although 89% of patients who died were recorded as having done so peacefully, 17% were reported to have had breathing difficulties (i.e., respiratory distress), 8% anxiety, 3.3% pain, and 2.5% choking. Advance directives were in place for 90% of the patients who died, and in 97% of cases these directives were followed.
Conclusions:— These findings indicate that in the 3-year period prior to the publication of the AAN Practice Parameter, many but not all patients received the care that is recommended in that parameter; there were deficiencies, particularly in the key areas of gastrostomy and noninvasive positive pressure ventilation.
This article has been cited by other articles:
|
|
 |
|
  R. G. Miller, C. E. Jackson, E. J. Kasarskis, J. D. England, D. Forshew, W. Johnston, S. Kalra, J. S. Katz, H. Mitsumoto, J. Rosenfeld, et al. Practice Parameter update: The care of the patient with amyotrophic lateral sclerosis: Multidisciplinary care, symptom management, and cognitive/behavioral impairment (an evidence-based review): Report of the Quality Standards Subcommittee of the American Academy of Neurology Neurology, October 13, 2009; 73(15): 1227 - 1233. [Abstract] [Full Text] [PDF]
|
|
|
|
|
|
M. Maessen, J. H. Veldink, B. D. Onwuteaka-Philipsen, J. M. de Vries, J.H.J. Wokke, G. van der Wal, and L. H. van den Berg Trends and determinants of end-of-life practices in ALS in the Netherlands Neurology, September 22, 2009; 73(12): 954 - 961. [Abstract] [Full Text] [PDF]
|
|
|
|
 |
|
 D. Lo Coco, S. Marchese, V. La Bella, T. Piccoli, and A. Lo Coco The Amyotrophic Lateral Sclerosis Functional Rating Scale Predicts Survival Time in Amyotrophic Lateral Sclerosis Patients on Invasive Mechanical Ventilation Chest, July 1, 2007; 132(1): 64 - 69. [Abstract] [Full Text] [PDF]
|
|
|
|
|
|
T. D. Heiman-Patterson and R. G. Miller NIPPV: a treatment for ALS whose time has come. Neurology, September 12, 2006; 67(5): 736 - 737. [Full Text] [PDF]
|
|
|
|
|
|
D. Lo Coco, S. Marchese, M. C. Pesco, V. La Bella, F. Piccoli, and A. Lo Coco Noninvasive positive-pressure ventilation in ALS: Predictors of tolerance and survival Neurology, September 12, 2006; 67(5): 761 - 765. [Abstract] [Full Text] [PDF]
|
|
|
|
 |
|
 L. B. Elman, L. Stanley, P. Gibbons, and L. McCluskey A cost comparison of hospice care in amyotrophic lateral sclerosis and lung cancer. American Journal of Hospice and Palliative Medicine, May 1, 2006; 23(3): 212 - 216. [Abstract] [PDF]
|
|
|
|
 |
|
 D. Eng Management guidelines for motor neurone disease patients on non-invasive ventilation at home Palliative Medicine, March 1, 2006; 20(2): 69 - 79. [Abstract] [PDF]
|
|
|
|
|
|
E. Farrero, E. Prats, M. Povedano, J. A. Martinez-Matos, F. Manresa, and J. Escarrabill Survival in Amyotrophic Lateral Sclerosis With Home Mechanical Ventilation: The Impact of Systematic Respiratory Assessment and Bulbar Involvement Chest, June 1, 2005; 127(6): 2132 - 2138. [Abstract] [Full Text] [PDF]
|
|
|
|
 |
|
 A Chio, R Galletti, C Finocchiaro, D Righi, M A Ruffino, A Calvo, N Di Vito, P Ghiglione, A A Terreni, and R Mutani Percutaneous radiological gastrostomy: a safe and effective method of nutritional tube placement in advanced ALS J. Neurol. Neurosurg. Psychiatry, April 1, 2004; 75(4): 645 - 647. [Abstract] [Full Text] [PDF]
|
|
|
|
|
|
B J Traynor, M Alexander, B Corr, E Frost, and O Hardiman Effect of a multidisciplinary amyotrophic lateral sclerosis (ALS) clinic on ALS survival: a population based study, 1996-2000 J. Neurol. Neurosurg. Psychiatry, September 1, 2003; 74(9): 1258 - 1261. [Abstract] [Full Text] [PDF]
|
|
|
|
|
|
H. Hayashi and E. A. Oppenheimer ALS patients on TPPV: Totally locked-in state, neurologic findings and ethical implications Neurology, July 8, 2003; 61(1): 135 - 137. [Abstract] [Full Text] [PDF]
|
|
|
|
 |
|
 R S Howard and R W Orrell Management of motor neurone disease Postgrad. Med. J., December 1, 2002; 78(926): 736 - 741. [Abstract] [Full Text] [PDF]
|
|
|
|
|
|
L. Ganzini, W. S. Johnston, and M. J. Silveira The final month of life in patients with ALS Neurology, August 13, 2002; 59(3): 428 - 431. [Abstract] [Full Text] [PDF]
|
|
|
|
 |
|
 L. Ganzini and S. Block Physician-Assisted Death -- A Last Resort? N. Engl. J. Med., May 23, 2002; 346(21): 1663 - 1665. [Full Text] [PDF]
|
|
| HOME | HELP | FEEDBACK | SUBSCRIPTIONS | ARCHIVE | SEARCH | TABLE OF CONTENTS |
