Outcomes research in amyotrophic lateral sclerosis: Lessons learned from the amyotrophic lateral sclerosis clinical assessment, research, and education database

Abstract

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.

Pseudobulbar affect: an under-recognized and under-treated neurological disorder

“…of patients were receiving treatment for PBA. 52 The present estimates of 27.5%, 32.5%, and 50% PBA prevalence in ALS patients identified with the CNS-LS≥21, PLACS≥13, and CNS-LS≥13 thresholds, respectively, are thus within the range of previously reported and clinically accepted estimates.…”

Multidisciplinary Care Improves Survival of Patients with Amyotrophic Lateral Sclerosis in the Unique Health System (SUS) in Brazil

“…Patients who benefit from a multidisciplinary approach also appear to receive more aids and appliances and have a higher quality of life [25].…”

Quality improvement in neurology: Amyotrophic lateral sclerosis quality measures

“…[7][8][9][10][11][12][13][14][15] Moreover, the online outcomes project ALSConnection documented that patients attending multidisciplinary clinics were more satisfied with their medical care and the telling of the diagnosis and had more beneficial use of different therapies compared to those receiving community care. 13 Enhanced survival and increased quality of life have been documented with utilization of noninvasive ventilation, 5,7,16218 and enteral feeding is probably effective in prolonging survival.…”

“…5 To identify gaps in care, specific aspects of management of patients with ALS have been evaluated serially using a national Amyotrophic Lateral Sclerosis Clinical Assessment, Research, and Education (ALS CARE) database to encourage compliance with evidence-based recommendations and to measure continuing quality improvement. 14,19 The most recent analysis of 5,600 patients with ALS shows that proper management of many ALS symptoms has increased substantially since the first publication of the AAN ALS guidelines in 1999, and awareness of therapeutic opportunities has increased. However, many evidence-based treatment recommendations are still underutilized.…”

“…However, many evidence-based treatment recommendations are still underutilized. 14 These gaps in care led the AAN to develop a new ALS quality measurement set to improve the quality of care for patients with ALS. The AAN ALS quality measurement set was developed by an interdisciplinary expert panel work group representing physician organizations, patient advocacy groups, and other relevant stakeholder groups concerned about the care of patients with ALS.…”