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Profile of Patients with Amyotrophic Lateral Sclerosis Across Continuum of Care

Published online by Cambridge University Press:  23 September 2014

Vahe Kehyayan
Affiliation:
School of Public Health & Health Systems, University of Waterloo, Waterloo, Ontario University of Calgary-Qatar, Calgary, Alberta, Canada
Lawrence Korngut
Affiliation:
Department of Clinical Neurosciences and Hotchkiss Brain Institute, Calgary, Alberta, Canada Department of Community Health Sciences and Institute for Public Health, Calgary, Alberta, Canada
Nathalie Jetté
Affiliation:
Department of Clinical Neurosciences and Hotchkiss Brain Institute, Calgary, Alberta, Canada Department of Community Health Sciences and Institute for Public Health, Calgary, Alberta, Canada
John P. Hirdes
Affiliation:
School of Public Health & Health Systems, University of Waterloo, Waterloo, Ontario
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Abstract

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Objective:

This study describes the socio-demographic and clinical profile of persons with amyotrophic lateral sclerosis (ALS) in home care, nursing homes and complex continuing care settings in several Canadian jurisdictions.

Methods:

A cross-sectional study was conducted using available Resident Assessment Instrument (RAI 2.0 and RAI Home Care) national databases from 1996- 2011. The profile of ALS patients was compared with patients without pre-specified neurological conditions.

Results:

There were 2,092 ALS patients identified in these settings. Persons with ALS were more likely than those in the comparison group to suffer from health instability (25.4%) and minor to major depressive symptoms (27.2%) , to experience falls (44.0%) and weight loss (22.9%), to require extensive assistance in activities of daily living (54.9%), and to receive rehabilitation services: physical (23.9%), speech language pathology (8.9%), and occupational therapy 43.3%).

Conclusions:

The ALS population in this study are greatly affected by a number of health issues. They are more likely than the comparison group to require therapies, medical interventions, and psychotropic drug use. While persons with ALS have a poor prognosis, a great deal could be done to enhance their quality of life and the quality of care they receive.

Type
Original Article
Copyright
Copyright © The Canadian Journal of Neurological 2014

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