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Brain Advance Access originally published online on September 6, 2006
Brain 2006 129(10):2648-2659; doi:10.1093/brain/awl223
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© The Author (2006). Published by Oxford University Press on behalf of the Guarantors of Brain. All rights reserved. For Permissions, please email: journals.permissions@oxfordjournals.org

The usefulness of evaluative outcome measures in patients with multiple sclerosis

V. de Groot1,4, H. Beckerman1,4, B. M. J. Uitdehaag2,3, H. C. W. de Vet4, G. J. Lankhorst1,4, C. H. Polman2 and L. M. Bouter4

1 Departments of Rehabilitation Medicine, VU University Medical Center Amsterdam, The Netherlands 2 Departments of Neurology, VU University Medical Center Amsterdam, The Netherlands 3 Departments of Clinical Epidemiology and Biostatistics, VU University Medical Center Amsterdam, The Netherlands 4 EMGO Institute, VU University Medical Center Amsterdam, The Netherlands

Correspondence to: Vincent de Groot, Department of Rehabilitation Medicine, VU University Medical Center, P.O. Box 7057, 1007 MB Amsterdam, The Netherlands E-mail: v.degroot{at}vumc.nl

To select the most useful evaluative outcome measures for early multiple sclerosis, we included 156 recently diagnosed patients in a 3-year follow-up study, and assessed them on 23 outcome measures in the domains of disease-specific outcomes, physical functioning, mental health, social functioning and general health. A global rating scale (GRS) and the Expanded Disability Status Scale (EDSS) were used as external criteria to determine the minimally important change (MIC) for each outcome measure. Subsequently, we determined whether the outcome measures could detect their MIC reliably. From these, per domain the outcome measure that was found to be most sensitive to changes (responsive) was identified. At group level, 11 outcomes of the domains of physical functioning, mental health, social functioning and general health could reliably detect the MIC. Of these 11, the most responsive measures per domain were the Medical Outcome Study 36 Short Form sub-scale physical functioning (SF36pf), the Disability and Impact Profile (DIP) sub-scale psychological, the Rehabilitation Activities Profile sub-scale occupation (RAPocc) and the SF36 sub-scale health, respectively. Overall, the most responsive measures were the SF36pf and the RAPocc. In individual patients, none of the measures could reliably detect the MIC. In sum, in the early stages of multiple sclerosis the most useful evaluative outcome measures for research are the SF36pf (physical functioning) and the RAPocc (social functioning).

Key Words: multiple sclerosis; evaluative outcome measures; responsiveness; minimally important change; smallest real change

Abbreviations: DIP, Disability and Impact Profile; EDSS, Expanded Disability Status Scale; GAS, Graphic Assessment Scale; MIC, minimally important change; MSFC, Multiple Sclerosis Functional Composite Measure; NHPT, nine-hole peg test; RAPocc, Rehabilitation Activities Profile sub-scale occupation; SaGAS, Short and Graphic Assessment Scale; SF36pf, Medical Outcome Study 36 Short Form sub-scale physical functioning; TWT, timed-walk test

Received February 10, 2006. Revised July 21, 2006. Accepted July 25, 2006.


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