Profile of patients with amyotrophic lateral sclerosis across continuum of care

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.