Profile of patients with amyotrophic lateral sclerosis across continuum of care
Open accessAbstract
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.
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Individuals with ALS are at higher risks for falls compared to the general population.
“In addition, individuals with ALS are at higher risks for falls compared to the general population and therefore may have an increased risk for developing CTE (42).”
From Chronic Traumatic Encephalopathy Within an Amyotrophic Lateral Sclerosis Brain Bank Cohort (2018) · cites this paper as [42]
The Health and Social-Economic Profile reports higher fall rates for people with ALS than for the comparison group in home care. But the Case Ascertainment and Sample Size sections define that group as patients in care settings without specified neurological conditions, not the general population. The cited paper therefore supports a narrower comparison than the claim makes. (LLM, conf=0.88)
Experimental — accuracy not yet measuredIndividuals with ALS may have an increased risk for developing CTE.
“In addition, individuals with ALS are at higher risks for falls compared to the general population and therefore may have an increased risk for developing CTE (42).”
From Chronic Traumatic Encephalopathy Within an Amyotrophic Lateral Sclerosis Brain Bank Cohort (2018) · cites this paper as [42]
The Health and Social-Economic Profile reports higher rates of falls among people with ALS in home care than among the study’s comparison group, not the general population. The paper does not link those falls to chronic traumatic encephalopathy (CTE) or assess CTE risk, so the proposed consequence is unsupported. (LLM, conf=0.86)
Experimental — accuracy not yet measuredParticipants with ALS have been shown to have an elevated frequency of minor to major depressive symptoms of approximately 27%.
“Participants with ALS have been shown to have an elevated frequency of minor to major depressive symptoms of approximately 27% (42), which is similar to the frequency of mood disorders amongst the VABBB ALS participants (26%).”
From Chronic Traumatic Encephalopathy Within an Amyotrophic Lateral Sclerosis Brain Bank Cohort (2018) · cites this paper as [42]
The Health and Social-Economic Profile table reports potential minor-to-major depressive episodes in 27.2% of ALS patients receiving home care, versus 14.5% of the home-care comparison group. The approximately 27% figure is supported for that setting, but not for ALS participants across all settings: the corresponding figures are 38.4% in nursing homes and 38.8% in complex continuing care. No page number is available in our copy. (LLM, conf=0.86)
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Oxley, T. J., Yoo, P. E., Rind, G. S., Ronayne, S. M., Lee, C. M. S., Bird, C., Hampshire, V., Sharma, R. P., Morokoff, A., Williams, D. L., et al. (2021) · Journal of NeuroInterventional Surgery · doi:10.1136/neurintsurg-2020-016862 · Cited by 243 · see citing works
Chronic Traumatic Encephalopathy Within an Amyotrophic Lateral Sclerosis Brain Bank Cohort
Walt, G. S., Burris, H. M., Brady, C. B., Spencer, K. R., Alvarez, V. E., Huber, B. R., Guilderson, L., Abdul Rauf, N., Collins, D., Singh, T., et al. (2018) · Journal of Neuropathology & Experimental Neurology · doi:10.1093/jnen/nly092 · Cited by 45 · see citing works
- Authors
- Kehyayan, V., Korngut, L., Jetté, N., & Hirdes, J. P.
- Affiliations
- University of Waterloo (CA)
- Hotchkiss Brain Institute (CA)
- Venue
- Canadian Journal of Neurological Sciences / Journal Canadien des Sciences Neurologiques
- Publisher
- Cambridge University Press (CUP)
- Published
- 2014-03
- Volume
- 41
- Issue
- 2
- Pages
- 246-252
- ISSN
- 0317-1671 (ISSN-L)
- 2057-0155
- OpenAlex
- W2325809822
- Cited by
- 14
- References
- 2
- Citations by year
- 2026: 2 · 2025: 2 · 2023: 1 · 2022: 1 · 2021: 3 · 2020: 2 · 2019: 1 · 2018: 1 · 2017: 1
- FWCI
- 0.22
- Type
- journal article
- Language
- en
- Open access
- bronze
- doi.org
- Locations
- Canadian Journal of Neurological Sciences / Journal Canadien des Sciences Neurologiques (publishedVersion)
- PubMed (publishedVersion)
- Funders
- Public Health Agency of Canada (6271-15-2010/3970773)
- Public Health Agency
- Alberta Innovates
- Topics
- Health Sciences › Medicine › Neurology › Amyotrophic Lateral Sclerosis Research
- Health Sciences › Health Professions › Pharmacy › Nursing care and research
- Health Sciences › Health Professions › General Health Professions › Geriatric Care and Nursing Homes
- Keywords
- amyotrophic lateral sclerosis, continuum of care, nursing homes, home care, Resident Assessment Instrument, socio-demographic profile, depressive symptoms, falls, weight loss, activities of daily living, rehabilitation services, psychotropic drug use, quality of life, quality of care
- MeSH terms
- Accidental Falls, Activities of Daily Living, Adult, Aged, Aged, 80 and over, Amyotrophic Lateral Sclerosis, Canada, Cross-Sectional Studies, Depression, Depressive Disorder, Major, Major Depressive Disorder, Female, Home Care Services, Humans, Male, Middle Aged, Nursing Homes, Occupational Therapy, Speech Therapy, Weight Loss, Databases, Factual, Housing for the Elderly, Physical Therapy Modalities
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