Hostname: page-component-78c5997874-g7gxr Total loading time: 0 Render date: 2024-11-13T01:55:35.797Z Has data issue: false hasContentIssue false

Measurement of Health-Related Quality of Life in Multiple Sclerosis Patients

Published online by Cambridge University Press:  18 September 2015

Donald G. Brunei
Affiliation:
Multiple Sclerosis Clinic, Kingston General Hospital Department of Medicine, Queen’s University, Kingston
Wilma M. Hopman*
Affiliation:
Department of Community Health and Epidemiology, Queen’s University, Kingston
Michael A. Singer
Affiliation:
Department of Medicine, Queen’s University, Kingston
Catherine M. Edgar
Affiliation:
Multiple Sclerosis Clinic, Kingston General Hospital
Thomas A. MacKenzie
Affiliation:
Department of Community Health and Epidemiology, Queen’s University, Kingston
*
Department of Community Health and Epidemiology. Abramsky Hall, Queen’s University, Kingston. Ontario, Canada K7L 3N6
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.

Background: Patient outcomes in multiple sclerosis (MS) have generally been measured by their neurological impairment using specific scales such as the Kurtzke Expanded Disability Status Scale (EDSS). However, this scale does not measure the multiple dimensions of health-related quality of life (HRQOL) such as functional status and general well-being, which are also important outcomes along with disease-specific measurements. Methods: HRQOL was measured in a group of 97 MS patients using the RAND 36-item Health Survey 1.0. The EDSS score was assigned by the clinic neurologist. Additional data were collected from the clinical record for each patient. Results: MS patients scored poorly in a number of HRQOL domains such as physical and role functioning and energy or vitality. Disability as quantified by the EDSS correlated only with the physical functioning domain. Regression models were developed to measure the relationship between patient characteristics (independent variables) and HRQOL domains (dependent variables). Discussion: A number of patient characteristics were associated with higher or lower scores on the HRQOL domains. Of particular interest is the finding that a family history of MS was associated with poorer physical and social functioning as well as more pain and less vitality. The occurrence of seizures had a negative impact on role functioning, social functioning and general health perceptions. HRQOL gives caregivers a broader measure of disease burden than the EDSS alone, and should be useful in planning and monitoring interventions.

Type
Original Articles
Copyright
Copyright © Canadian Neurological Sciences Federation 1996

References

1.International Federation of Multiple Sclerosis Societies. Minimal record of disability for Multiple Sclerosis. New York; National Multiple Sclerosis Society, 1985.Google Scholar
2.Kurtzke, JF.Rating neurological impairment in multiple sclerosis: an Expanded Disability Status Scale (EDSS). Neurology 1983; 33: 14441452.CrossRefGoogle Scholar
3.Wilson, IB, Cleary, PD.Linking clinical variables with health-related quality of life – a conceptual model of patient outcomes JAMA 1995; 273:5965.CrossRefGoogle ScholarPubMed
4.Stewart, AL, Greenfield, S, Hays, RD, et al. Functional status and well-being of patients with chronic conditions. Results from the Medical Outcomes Study JAMA 1989; 262: 907913.CrossRefGoogle ScholarPubMed
5.Hays, RD, Sherbourne, CD, Mazel, RM.The RAND 36-item health survey 1.0. Health Economics 1993; 2: 217227.CrossRefGoogle ScholarPubMed
6.Ware, JE Jr, Sherbourne, CD.The MOS 36 – item short-form health survey (SF-36). 1) Conceptual framework and item selection. Med Care 1992; 30:473483.CrossRefGoogle ScholarPubMed
7.McHorney, CA, Ware, JE Jr, Raczek, AE.The MOS 36-item short form health survey (SF-36): 2) Psychometric and clinical tests of validity in measuring physical and mental health constructs. Med Care 1993; 31:247263.CrossRefGoogle Scholar
8.McHorney, CA, Ware, JE Jr, Lu, JFR, Sherbourne, CD.The MOS 36-item short form health survey (SF-36): 3) Tests of data quality, scaling assumptions and reliability across diverse patient groups. Med Care 1994; 32: 4066.CrossRefGoogle ScholarPubMed
9.Stewart, AL & Ware, JE Jr, editors. Measuring Functioning and Well-being: The Medical Outcomes Study Approach. Durham: Duke University Press, 1992.Google Scholar
10.Ashton-Tate Corporation, d Base IV, Version 1.1, 1992.Google Scholar
11.Systat Incorporated, SYSTAT, Version 5.03, 1991.Google Scholar
12.Poser, CM, Paty, DW, Scheinberg, L, et al. New diagnostic criteria for multiple sclerosis: guidelines for research protocols. Ann Neurol 1983; 13:227231.CrossRefGoogle ScholarPubMed
13.Matthews, WB, Compston, A, Allen, IV, Martyn, CN.McAlpine’s Multiple Sclerosis. New York: Churchill Livingston, Second Edition, 1991: 143144.Google Scholar
14.Ware, JE Jr. editor SF-36 Health Survey Manual and Interpretation Guide. Boston: The Health Institute, New England Medical Center, 1993. Hermann, B, Vickrey, B, Hays, R, et al. Health related quality of life in neurological and non-neurological disease. Neurology 1995; 45 (Suppl.) 4: A423A424.Google Scholar
16.Vickrey, BG, Hays, RD, Harooni, R, Myers, LW, Ellison, GW.Development and evaluation of a new health-related quality of life measure for multiple sclerosis. Neurology 1995; 45 (Suppl.) 4: A333A334.Google Scholar
17.Rudick, RA, Miller, D, Clough, JD, Gragg, LA, Farmer, RG.Quality of life in multiple sclerosis: comparison with inflammatory bowel disease and rheumatoid arthritis. Arch Neurol 1992; 49: 12371242.CrossRefGoogle ScholarPubMed
18.Sedovnick, AD, Baird, PA, Ward, RH.Multiple sclerosis: updated risks for relatives. Am J Med Genet 1988; 29: 533541.CrossRefGoogle Scholar
19.Weinshenker, BD, Bulman, D, Carriere, W, Baskerville, J, Ebers, GC.A comparison of sporadic and familial multiple sclerosis. Neurology 1990; 40: 13541358.CrossRefGoogle ScholarPubMed
20.Matthews, WB, Compston, A, Allen, IV, Martyn, CN.McAlpine’s Multiple Sclerosis. New York: Churchill Livingston, Second Edition. 1991: 6162.Google Scholar