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March 12, 2013; 80 (11) Article

Disability in multiple sclerosis

A reference for patients and clinicians

Ilya Kister, Eric Chamot, Amber R. Salter, Gary R. Cutter, Tamar E. Bacon, Joseph Herbert
First published February 20, 2013, DOI: https://doi.org/10.1212/WNL.0b013e3182872855
Ilya Kister
From the Department of Neurology (I.K., T.E.B., J.H.), NYU-Multiple Sclerosis Care Center, NYU School of Medicine, New York, NY; and the Departments of Epidemiology (E.C.) and Biostatistics (A.R.S., G.R.C.), University of Alabama at Birmingham School of Public Health, Birmingham.
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Eric Chamot
From the Department of Neurology (I.K., T.E.B., J.H.), NYU-Multiple Sclerosis Care Center, NYU School of Medicine, New York, NY; and the Departments of Epidemiology (E.C.) and Biostatistics (A.R.S., G.R.C.), University of Alabama at Birmingham School of Public Health, Birmingham.
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Amber R. Salter
From the Department of Neurology (I.K., T.E.B., J.H.), NYU-Multiple Sclerosis Care Center, NYU School of Medicine, New York, NY; and the Departments of Epidemiology (E.C.) and Biostatistics (A.R.S., G.R.C.), University of Alabama at Birmingham School of Public Health, Birmingham.
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Gary R. Cutter
From the Department of Neurology (I.K., T.E.B., J.H.), NYU-Multiple Sclerosis Care Center, NYU School of Medicine, New York, NY; and the Departments of Epidemiology (E.C.) and Biostatistics (A.R.S., G.R.C.), University of Alabama at Birmingham School of Public Health, Birmingham.
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Tamar E. Bacon
From the Department of Neurology (I.K., T.E.B., J.H.), NYU-Multiple Sclerosis Care Center, NYU School of Medicine, New York, NY; and the Departments of Epidemiology (E.C.) and Biostatistics (A.R.S., G.R.C.), University of Alabama at Birmingham School of Public Health, Birmingham.
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Joseph Herbert
From the Department of Neurology (I.K., T.E.B., J.H.), NYU-Multiple Sclerosis Care Center, NYU School of Medicine, New York, NY; and the Departments of Epidemiology (E.C.) and Biostatistics (A.R.S., G.R.C.), University of Alabama at Birmingham School of Public Health, Birmingham.
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Citation
Disability in multiple sclerosis
A reference for patients and clinicians
Ilya Kister, Eric Chamot, Amber R. Salter, Gary R. Cutter, Tamar E. Bacon, Joseph Herbert
Neurology Mar 2013, 80 (11) 1018-1024; DOI: 10.1212/WNL.0b013e3182872855

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Abstract

Objective: To create a reference table of disability outcomes in multiple sclerosis (MS) that would enable patients to rank their disability relative to others' with similar disease duration and to develop a cost-effective research tool for comparing MS severity across patient populations and time periods.

Methods: The North American Research Committee on Multiple Sclerosis (NARCOMS) Registry collects disability data from patients with MS on a validated, 9-point Patient-Determined Disease Steps (PDDS) scale. We compiled the Disability Expectancy Table, which displays cumulative frequencies of PDDS scores for each year of disease duration, from 0 to 45 years. We also tabulated disease duration–adjusted mean ranks of PDDS scores, referred to as Patient-derived MS Severity Scores (P-MSSS).

Results: The cohort consisted of 27,918 NARCOMS enrollees, 72.7% of whom were female and 90.1% of whom were white. Mean age at symptom onset was 30.1 ± 10.1 years, and age at enrollment was 47.1 ± 11.0 years. The Disability Expectancy Table and P-MSSS afford a detailed overview of disability outcomes in a large MS cohort over a 45-year period. In the first year of disease, 15% of patients reported need of ambulatory aid, and 4% needed bilateral assistance or worse; after 45 years of disease, 76% of patients required ambulatory aid, and 52% bilateral assistance or worse. Proportion of patients who reported minimal or no interference in daily activities (PDDS ≤ 1) declined from 63% in the first year to 8% after 45 years of disease.

Conclusion: The Disability Expectancy Table allows individual patients to determine how their disability ranks relative to NARCOMS enrollees with the same disease duration. P-MSSS may be used to compare disability across patient populations and to track disease progression in patient cohorts. P-MSSS does not require a formal neurologic examination and may therefore find wide applicability as a practical and cost-effective outcome measure in epidemiologic studies.

GLOSSARY

DET=
Disability Expectancy Table;
EDSS=
Expanded Disability Status Scale;
GAMES=
Genetic Analysis of Multiple Sclerosis in Europeans;
MS=
multiple sclerosis;
MSSS=
Multiple Sclerosis Severity Score;
NARCOMS=
North American Research Committee on Multiple Sclerosis;
NHIS-D=
National Health Interview Survey on Disability;
P-MSSS=
Patient-derived MS Severity Score;
PDDS=
Patient-Determined Disease Steps

Footnotes

  • Go to Neurology.org for full disclosures. Funding information and disclosures deemed relevant by the authors, if any, are provided at the end of the article.

  • Received August 17, 2012.
  • Accepted November 26, 2012.
  • © 2013 American Academy of Neurology
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    • METHODS
    • RESULTS
    • DISCUSSION
    • AUTHOR CONTRIBUTIONS
    • STUDY FUNDING
    • DISCLOSURE
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    • Appendix Patient-determined disease steps (this non-copyrighted scale is an expanded version of Disease Steps introduced by Hohol et al.27,28)
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