OBJECTIVE: To examine the care of patients with ALS following the publication of the standardized recommendations for the management of patients with amyotrophic lateral sclerosis (ALS) published in 1999 by the American Academy of Neurology. METHODS: Specific aspects of ALS patient management have been evaluated serially using a national Amyotrophic Lateral Sclerosis Clinical Assessment, Research, and Education (ALS CARE) database to encourage compliance with these recommendations and to assure continuing quality improvement. RESULTS: The most recent analysis of 5,600 patients shows interesting epidemiological observations and treatment trends. Proper management of many ALS symptoms has increased substantially since the first publication of the guidelines, and awareness of pseudobulbar affect has increased. Other recommendations are underutilized: Only 9% undergo percutaneous endoscopic gastrostomy, although this procedure was recommended in 22% of patients; and noninvasive positive pressure ventilation was used by only 21% of patients despite being associated with improved 5-year survival rates. INTERPRETATION: This observational database has been a useful tool in monitoring compliance with the standard of care for patients with ALS and may have resulted in greater adherence to guidelines.
OBJECTIVE: To examine the care of patients with ALS following the publication of the standardized recommendations for the management of patients with amyotrophic lateral sclerosis (ALS) published in 1999 by the American Academy of Neurology. METHODS: Specific aspects of ALSpatient management have been evaluated serially using a national Amyotrophic Lateral Sclerosis Clinical Assessment, Research, and Education (ALS CARE) database to encourage compliance with these recommendations and to assure continuing quality improvement. RESULTS: The most recent analysis of 5,600 patients shows interesting epidemiological observations and treatment trends. Proper management of many ALS symptoms has increased substantially since the first publication of the guidelines, and awareness of pseudobulbar affect has increased. Other recommendations are underutilized: Only 9% undergo percutaneous endoscopic gastrostomy, although this procedure was recommended in 22% of patients; and noninvasive positive pressure ventilation was used by only 21% of patients despite being associated with improved 5-year survival rates. INTERPRETATION: This observational database has been a useful tool in monitoring compliance with the standard of care for patients with ALS and may have resulted in greater adherence to guidelines.
Authors: Lynn M McCane; Eric W Sellers; Dennis J McFarland; Joseph N Mak; C Steve Carmack; Debra Zeitlin; Jonathan R Wolpaw; Theresa M Vaughan Journal: Amyotroph Lateral Scler Frontotemporal Degener Date: 2014-02-20 Impact factor: 4.092
Authors: K Vijayalakshmi; Piyush Ostwal; R Sumitha; S Shruthi; Anu Mary Varghese; Poojashree Mishra; S Gowri Manohari; B C Sagar; T N Sathyaprabha; A Nalini; T R Raju; Phalguni Anand Alladi Journal: Mol Neurobiol Date: 2014-06-01 Impact factor: 5.590
Authors: Robert G Miller; Benjamin Rix Brooks; Rebecca J Swain-Eng; Robert C Basner; Gregory T Carter; Patricia Casey; Adam B Cohen; Richard Dubinsky; Dallas Forshew; Carlayne E Jackson; Ed Kasarskis; Nicholas J Procaccini; Mohammed Sanjak; Fredrik P Tolin Journal: Neurology Date: 2013-11-22 Impact factor: 9.910
Authors: Paul Wicks; Michael Massagli; Jeana Frost; Catherine Brownstein; Sally Okun; Timothy Vaughan; Richard Bradley; James Heywood Journal: J Med Internet Res Date: 2010-06-14 Impact factor: 5.428
Authors: Pooja-Shree Mishra; Dinesh K Dhull; A Nalini; K Vijayalakshmi; T N Sathyaprabha; Phalguni Anand Alladi; Trichur R Raju Journal: J Neuroinflammation Date: 2016-08-30 Impact factor: 8.322
Authors: Paul Talman; Thi Duong; Steve Vucic; Susan Mathers; Svetha Venkatesh; Robert Henderson; Dominic Rowe; David Schultz; Robert Edis; Merrilee Needham; Richard Macdonnell; Pamela McCombe; Carol Birks; Matthew Kiernan Journal: BMJ Open Date: 2016-09-30 Impact factor: 2.692