Hostname: page-component-745bb68f8f-v2bm5 Total loading time: 0 Render date: 2025-01-12T07:58:24.888Z Has data issue: false hasContentIssue false
  • English
  • Français

Profile of Patients with Amyotrophic Lateral Sclerosis Across Continuum of Care

Published online by Cambridge University Press:  23 September 2014

Vahe Kehyayan ,
Lawrence Korngut ,
Nathalie Jetté  and
John P. Hirdes
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
Rights & Permissions [Opens in a new window]

Abstract

Core share and HTML view are not available for this content. However, as you have access to this content, a full PDF is available via the ‘Save PDF’ action button.
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
Information
Canadian Journal of Neurological Sciences , Volume 41 , Issue 2 , March 2014 , pp. 246 - 252
Copyright
Copyright © The Canadian Journal of Neurological 2014

References

1.Kiernan, MC, Vucic, S, Cheah, BC, et al. Amyotrophic lateral sclerosis. Lancet. 2011;377:942–55.Google Scholar
2.Murray, CA, editor. Amyotrophic lateral sclerosis. New York: Nova Science Publishers, Inc.; 2006.Google Scholar
3.Miller, RG, Gelinas, D, O’Connor, P.Amyotrophic lateral sclerosis. New York: American Academy of Neurology; 2005.Google Scholar
4.Wolfson, C, Kilborn, S, Oskoui, M, Genge, A.Incidence and prevalence of amyotrophic lateral sclerosis in Canada: a systematic review of the literature. Neuroepidemiology. 2009; 33:79–88.CrossRefGoogle Scholar
5.Logroscino, G, Traynor, BJ, Hardiman, O, et al. Incidence of amyotrophic lateral sclerosis in Europe. J Neurol Neurosurg Psychiatry. 2010;81:385–90.CrossRefGoogle ScholarPubMed
6.Abrahams, S.Social cognition in amyotrophic lateral sclerosis. Neurodegener Dis Manag. 2011;1:397–405.Google Scholar
7.Phukan, J, Elamin, M, Bede, P, et al. The syndrome of cognitive impairment in amyotrophic lateral sclerosis: a population-based study. J Neurol Neurosurg Psychiatry. 2012;83:102–8.Google Scholar
8.Atassi, N, Cook, A, Pineda, CME, Yerramilli-Rao, P, Pulley, D, Cudkowicz, M.Depression in amyotrophic lateral sclerosis. Amyotrop Lateral Scler. 2011;12:109–12.Google Scholar
9.Canadian Institute for Health Information. Continuing care reporting system metadata. [cited 2013 Feb 12] Available from: http://www.cihi.ca/CIHI-ext-portal/internet/en/document/types+of+care/hospital+care/continuing+care/ccrs_metadata.Google Scholar
10.Canadian Institute for Health Information. Home care reporting system. [cited 2013 Feb 12] Available from: http://www.cihi.ca/cihi-ext-portal/internet/en/document/types+of+care/community+care/home+care/hcrs_metadata.Google Scholar
11.Gambassi, G, Landi, F, Peng, L, et al. Validity of diagnostic and drug data in standardized nursing home resident assessments - potential for geriatric pharmacoepidemiology. Med Care. 1998; 36(2):167–79.CrossRefGoogle ScholarPubMed
12.Wodchis, WP, Naglie, G, Teare, GF.Validating diagnostic information on the minimum data set in Ontario hospital-based long-term care. Med Care. 2008;46:882–7.Google Scholar
13.Gray, LC, Berg, K, Fries, BE, et al. Sharing clinical information across care settings: the birth of an integrated assessment system. BMC Health Serv Res. [Published 2009 Apr 29];9:71. Available from http://www.biomedcentral.com/1472-6963/9/71.Google Scholar
14.Morris, JN, Fries, BE, Mehr, DR, Hawes, C.MDS cognitive performance scale®. J Gerontol. 1994;49:M174–82.Google Scholar
15.Burrows, AB, Morris, JN, Simon, SE, Hirdes, JP, Phillips, C.Development of a minimum data set-based depression rating scale for use in nursing homes. Age Ageing. 2000;29:165–72.CrossRefGoogle ScholarPubMed
16.Hirdes, JP, Frijters, DH, Teare, GF.The MDS-CHESS scale: a new measure to predict mortality in institutionalized older people. J Am Geriatr Soc. 2003;51:96–100.Google Scholar
17.Morris, JN, Fries, BE, Morris, SA.Scaling ADLs within the MDS. J Gerontol. 1999;54:M546–53.Google Scholar
18.Perlman, CM, Hirdes, JP.The aggressive behavior scale: a new scale to measure aggression based on the minimum data set. J Am Geriatr Soc. 2008;56:2298–303.Google Scholar
19.Fries, BE, Simon, SE, Morris, JN.Pain in U.S. nursing homes: validating a pain scale for the minimum data set. Gerontologist. 2001;41:173–9.CrossRefGoogle ScholarPubMed
20.Morris, JN, Carpenter, I, Berg, K, Jones, RN.Outcome measures for use with home care clients. Can J Aging. 2000;19:87–105.Google Scholar
21.Hirdes, JP, Ljunggren, G, Morris, JN, et al. Reliability of the interRAI suite of assessment instruments: a 12-country study of an integrated health information system. BMC Health Serv Res. 2008;8:1–11.Google Scholar
22.Landi, F, Tua, E, Onder, G, et al. Minimum data set for home care: a valid instrument to assess frail older people living in the community. Med Care. 2000;38:1184–90.Google Scholar
23.Morris, JN, Fries, BE, Steel, K.Comprehensive clinical assessment in community setting: applicability of the MDS-HC. J Am Geriatr Soc. 1997;45:1017–24.Google Scholar
24.Poss, JW, Jutan, NM, Hirdes, JP, et al. A review of evidence on the reliability and validity of minimum data set data. Healthc Manage Forum. 2008;21:33–9.CrossRefGoogle ScholarPubMed
25.Jensen, MP, Abresch, RT, Carter, GT, McDonald, CM.Chronic pain in persons with neuromuscular disease. Arch Phys Med Rehabil. 2005;86:1155–63.Google Scholar
26.Kasarskis, EJ, Berryman, S, Vanderleest, JG, Schneider, AR, McClain, CJ.Nutritional status of patients with amyotrophic lateral sclerosis: relation to the proximity of death. Am J Clin Nutr. 1996;63:130–7.Google Scholar
27.Gauthier, A, Vignola, A, Calvo, A, et al. A longitudinal study on quality of life and depression in ALS patient-caregiver couples. Neurology. 2007;68:923–6.Google Scholar
28.Traynor, BJ, Alexander, M, Corr, B, Frost, E, Hardiman, O.An outcome study of riluzole in amyotrophic lateral sclerosis–a population-based study in Ireland, 1996–2000. J Neurol. 2003; 250:473–9.Google Scholar
29.Zoccolella, S, Beghi, E, Palagano, G, et al. ALS multidisciplinary clinic and survival. Results from a population-based study in Southern Italy. J Neurol. 2007;254:1107–12.Google Scholar