Hostname: page-component-586b7cd67f-t7fkt Total loading time: 0 Render date: 2024-11-25T06:39:02.219Z Has data issue: false hasContentIssue false
  • English
  • Français

Do General and Multiple Sclerosis-Specific Quality of Life Instruments Differ?

Published online by Cambridge University Press:  02 December 2014

Fraser Moore ,
Christina Wolfson ,
Lubo Alexandrov  and
Yves Lapierre
Fraser Moore
Affiliation:
Department of Neurology, Jewish General Hospital, Montreal, QC, Canada
Christina Wolfson
Affiliation:
Centre for Clinical Epidemiology and Community Studies, Jewish General Hospital, Montreal, QC, Canada Department of Epidemiology and Biostatistics, McGill University, Montreal, QC, Canada
Lubo Alexandrov
Affiliation:
Centre for Clinical Epidemiology and Community Studies, Jewish General Hospital, Montreal, QC, Canada
Yves Lapierre
Affiliation:
McGill Multiple Sclerosis Clinic, Montreal Neurological Hospital, Montreal, QC, Canada
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:

Quality of life instruments provide information that traditional outcome measures used in studies of multiple sclerosis do not. It is unclear if longer, disease-specific instruments provide more useful information than shorter, more general instruments, or whether patients prefer one type to another.

Methods:

We conducted a cross-sectional study of quality of life in a multiple sclerosis clinic population using a mailed questionnaire that combined three different quality of life instruments; the SF-36, the Multiple Sclerosis Quality of Life Instrument-54, and the EuroQol EQ-5D. We assessed the feasability of using each instrument and patient preference for each, calculated correlation coefficients for the summary scores of each instrument and other measures of disease severity, and calculated odds ratios from proportional odds models comparing each instrument with the Expanded Disability Status Scale.

Results:

We did not find substantial differences between the three instruments. All were well-received by patients, and over 75% felt that the combination of the three instruments best assessed their quality of life. For each instrument there was substantial variability between patients with similar quality of life scores in terms of their disability (as assessed by the Expanded Disability Status Scale and their own perception of their disease severity and quality of life (on simple 1-10 scales).

Conclusion:

Quality of life instruments are easy to use and well-received by patients, regardless of their length. There do not appear to be clinically important differences between general and disease-specific instruments. Each instrument appears to measure something other than a patient’s disability or perception of their own disease severity or quality of life.

Type
Research Article
Information
Canadian Journal of Neurological Sciences , Volume 31 , Issue 1 , February 2004 , pp. 64 - 71
Copyright
Copyright © The Canadian Journal of Neurological 2004

References

1.Noseworthy, JH, Lucchinetti, C, Rodriguez, M, Weinshenker, BG.Multiple Sclerosis. N Eng J Med 2000; 343: 938–952.Google Scholar
2.Lublin, FD, Reingold, SC.Defining the clinical course of multiplesclerosis: results of an international survey. Neurology 1996; 46: 907–911.Google Scholar
3.The IFNp Multiple Sclerosis Study Group. Interferon beta-1b iseffective in relapsing-remitting multiple sclerosis. I. Clinical results of a multicenter, randomized, double-blind, placebo-controlled trial. Neurology 1993; 43: 655–661.CrossRefGoogle Scholar
4.Johnson, KP, Brooks, BR, Cohen, JA, et al.Copolymer 1 reducesrelapse rate and improves disability in relapsing-remitting multiple sclerosis: results of a phase III multicenter, double-blind, placebo-controlled trial. Neurology 1995; 45: 1268–1276.Google Scholar
5.Jacobs, LD, Cookfair, DL, Rudick, RA, et al.Intramuscular interferonbeta-1a for disease progression in relapsing multiple sclerosis. Ann Neurol 1996; 39: 285–294. [Erratum, Ann Neurol 1996;40:480.]Google Scholar
6.PRISMS (Prevention of Relapses and Disability by Interferon |3-1aSubcutaneously in Multiple Sclerosis) Study Group. Randomized double-blind placebo-controlled study of interferon |3-1a in relapsing/remitting multiple sclerosis. Lancet 1998; 352: 1498–1504. [Erratum, Lancet 1999;353:678.]Google Scholar
7.European Study Group on Interferon |3-1b in Secondary ProgressiveMS. Placebo-controlled multicentre randomized trial of interferon |3-1b in treatment of secondary progressive multiplesclerosis. Lancet 1998; 352: 1491–1497.CrossRefGoogle Scholar
8.Kurtzke, JF.Rating neurological impairment in multiple sclerosis: anExpanded Disability Status Scale (EDSS). Neurology 1983; 33:1444–1452.Google Scholar
9.Fletcher, A, Gore, S, Jones, D, et al.Quality of life measures in healthcare. II: Design, analysis, and interpretation. Br Med J 1992; 305:1145–1148.Google Scholar
10.Bulpitt, CJ.Quality of life as an outcome measure. Postgrad Med J 1997; 73: 613–616.Google Scholar
11.Rothwell, PM.Quality of life in multiple sclerosis. J NeurolNeurosurg Psychiatry 1998; 65(4): 433.Google Scholar
12.Myhr, KM, Riise, T, Green Lilleas, FE, et al.Interferon-alpha2areduces MRI disease activity in relapsing-remitting multiple sclerosis. Norwegian Study Group on Interpheron-alpha in Multiple Sclerosis. Neurology 1999; 52(5): 1049–1056.CrossRefGoogle Scholar
13.Solari, A, Filippini, G, Gasco, P, et al.Physical rehabilitation has apositive effect on disability in multiple sclerosis patients. Neurology 1999; 52(1): 57–62.CrossRefGoogle Scholar
14.Schwartz, CE.Teaching coping skills enhances quality of life morethan peer support: results of a randomised trial with multiplesclerosis patients. Health Psychol 1999; 18(3): 211–220.Google Scholar
15.Fabio, RP, Choi, T, Soderberg, J, Hansen, CR.Health-related qualityof life for patients with progressive multiple sclerosis: influenceof rehabilitation. Phys Ther 1997; 77(12): 1704–1716.Google Scholar
16.Petajan, JH, Gappmaier, E, White, AT, et al.Impact of aerobic trainingon fitness and quality of life in multiple sclerosis. Ann Neurol 1996; 39(4): 432–441.Google Scholar
17.Vickrey, BG, Hays, RD, Harooni, R, et al.A health-related quality of life measure for multiple sclerosis. Quality Life Res 1995; 4: 187–206.Google Scholar
18.Cella, DF, Dineen, K, Arnason, B, et al.Validation of the FunctionalAssessment of Multiple Sclerosis quality of life instrument. Neurology 1996; 47: 129–139.Google Scholar
19.Fischer, JS, LaRocca, NG, Miller, DM, et al.Recent developments inthe assessment of quality of life in Multiple Sclerosis. Mult Scler 1999; 5: 251–259.Google Scholar
20.Gulick, EE, Cook, SD, Troiano, R.Comparison of patient and staffassessment of MS patients’ health status. Acta Neurol Scand 1993; 88: 87–93.Google Scholar
21.Brownscombe, IA, Laupacis, A, Rice, GPA, et al.Development of adisease-specific quality of life measure for multiple sclerosis (abstract). Neurology 1990; 40 (Suppl.1): 142.Google Scholar
22. Vickrey BG, Hays RD, Genovese BJ, et al. Comparison of a genericto disease-targeted health-related quality-of-life measures formultiple sclerosis. J Clin Epidemiol 1997; 50(5): 557-569.Google Scholar
23.Miller, DM.Health-related quality-of-life assessment. In: Rudick, RA, Goodkin, DE, Eds. Multiple Sclerosis Therapeutics. London:Martin Dunitz; 1999: 49–63.Google Scholar
24.Brooks, R.EuroQol: the current state of play. Health Policy 1996; 37: 53–72.Google Scholar
25.Ware, JE.SF-36 Health Survey Update. Spine 2000; 25(24): 3130–3139.Google Scholar
26.Freeman, JA, Hobart, JC, Thompson, AJ.Does adding MS-specificitems to a generic measure (the SF-36) improve measurement? Neurology 2001; 57: 68–74.Google Scholar
27.Brazier, J, Jones, N, Kind, PTesting the validity of the EuroqQol andcomparing it with the SF-36 health survey questionnaire. QualLife Res 1993; 2: 169–180.Google Scholar
28.Essink-Bot, M-L, Krabbe, PFM, Bonsel, GJ, Aaronson, NK.Anempirical comparison of four generic health status measures. Med Care 1997; 35(5): 522–537.Google Scholar
29.Nicholl, CR, Lincoln, NB, Francis, VM, Stephan, TF.Assessingquality of life in people with multiple sclerosis. Dis Rehab 2001;23(14): 597–603.Google Scholar
30.Rothwell, PM, McDowell, Z, Wong, CK, Dorman, PJ.Doctors andpatients don't agree: cross sectional study of patients’ and doctors’ perceptions and assessments of disability in multiple sclerosis. Br Med J 1997; 314: 1580–1583.Google Scholar
31.Poser, CM, PatyDW, DW,Scheinberg, L, et al.New diagnostic criteria formultiple sclerosis: guidelines for research protocols. Ann Neurol 1983; 13: 227–231.Google Scholar
32.Ware, JE, Sgerbourne, CD.The MOS 36-item short-form healthsurvey (SF-36): conceptual framework and item selection. MedCare 1992; 30: 473–483.Google Scholar
33.Ware, JE, Snow, KK, Kosinski, M.SF-36 health survey: manual andinterpretation guide. Lincoln, RI: QualityMetric Incorporated,2000.Google Scholar
34.Ware, JE, Kosinski, M.SF-36 physical and mental health summaryscales: a manual for users of Version 1, 2nd ed. Lincoln, RI: QualityMetric Incorporated, 2001.Google Scholar
35.Rice, GP, Oger, J, Duquette, P, et al.Treatment with Interferon Beta-1b improves quality of life in multiple sclerosis. Can J Neurol Sci 1999; 26: 276–282.Google Scholar
36.Brunet, DG, Hopman, WM, Singer, MA, et al.Measurement ofhealth-related quality of life in multiple sclerosis patients. Can JNeurol Sci 1996; 23: 99–103.Google Scholar
37.The Canadian Burden of Illness Study Group. Burden of illness ofmultiple sclerosis: Part II: Quality of life. Can J Neurol Sci 1998 25: 31–38.Google Scholar
38.Solari, A, Filippini, G, Mendozzi, L, et al.Validation of Italianmultiple sclerosis quality of life 54 questionnaire. J NeurolNeurosurg Psychiatry 1999; 67: 158–162.Google Scholar
39.Parkin, D, Jacoby, A, McNamee, P, et al.Treatment of multiplesclerosis with interferon p: an appraisal of cost-effectiveness and quality of life. J Neurol Neurosurg Psychiatry 2000; 68: 144–149.CrossRefGoogle Scholar
40.Vernay, D, Gerbaud, L, Biolay, S, et al.Qualité de vie et sclérose enplaques: validation de la version francophone d'un auto-question¬naire, le SEP-59. Rev Neurol (Paris) 2000; 156(3): 247–263.Google Scholar
41.O’Connor, P, Lee, L, Tin Ng, P, et al.Determinants of overall qualityof life in secondary progressive MS: a longitudinal study. Neurology 2001; 57: 889–891.Google Scholar
42.Kind, P, Dolan, P, Gudex, C, Williams, A.Variations in populationhealth status: results from a United Kingdom national questionnaire survey. Br Med J 1998; 316: 736–741.Google Scholar
43.Dolan, P.Modeling valuations for EuroQol health states. Med Care 1997; 35(11): 1095–1108.Google Scholar
44.Solari, A, Radice, D.Health status of people with multiple sclerosis:a community mail survey. Neurol Sci 2001; 22: 307–315.Google Scholar
45.Zorzon, M, Zivadinov, R, Monti Bragadin, L, et al.Sexualdysfunction in multiple sclerosis: a 2-year follow-up study. J Neurol Sci 2001; 187(1-2): 1–5.CrossRefGoogle Scholar
46.Nortvedt, MW, Riise, T, Myhr, K-M, et al.Reduced quality of lifeamong multiple sclerosis patients with sexual disturbance andbladder dysfunction. Mult Scler 2001; 7: 231–235.Google Scholar