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Cited by 272Multiple Sclerosis Research StudiesHealth Systems, Economic Evaluations, Quality of LifeMusculoskeletal pain and rehabilitation

The DOI matches its Crossref record; 74 of the 74 references it cites were found in a registry or an index.

The Sonya Slifka Longitudinal Multiple Sclerosis Study: methods and sample characteristics

Minden, S L, Frankel, D, Hadden, L, Perloff, J, Srinath, K P, Hoaglin, D C·2006·Multiple Sclerosis Journal
DOI 10.1191/135248506ms1262oa
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Abstract

The Sonya Slifka Longitudinal Multiple Sclerosis Study follows a population-based cohort of approximately 2000 people with multiple sclerosis (MS) to study demographic and clinical characteristics, course of illness, utilization and cost of health services, provider characteristics, use of MS specialists and disease modifying agents, and neurologic, economic and psychosocial outcomes. This report describes the study methodology, presents baseline demographic and clinical data, and evaluates the representativeness of the sample. A stratified random sample of persons with established and recently-diagnosed MS selected from the National Multiple Sclerosis Society (NMSS) mailing lists was supplemented with recently-diagnosed patients recruited through systematic nationwide outreach. Baseline data were collected by computer-assisted telephone interviews derived from standardized instruments; data collection continues at six-month intervals. The cohort was comparable to population-based and clinical samples with respect to demographics, course, relapse rate, symptoms, and severity of disability. Almost two-thirds of the cohort needed help with activities of daily living, three-quarters were limited in work or other activities, and half had emotional problems that compromised quality of life. The Slifka Study cohort is broadly representative of the MS population and the database can be used to address questions not answered by natural history studies, clinical databases, or population-based surveys.

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Citations

Cites

Show all 73 references

Research works printed but not linked: 13

  1. Multiple Sclerosis Quality of Life Inventory: a User’s Manual. Prepared by the Consortium of Multiple Sclerosis Centers, 1997, National Multiple Sclerosis Society
  2. Minden SL, 1993, Multiple sclerosis: a statistical portrait. Compendium of data on demographics, disability and health services utilization in the US
  3. The National MS Society, 1998, An analysis of non-members. Report prepared for the National Multiple Sclerosis Society
  4. US Census Bureau, 2000, Overview of Race and Hispanic Origin, Census
  5. US Census Bureau, Basic Monthly Survey, CPS Questionnaire
  6. Collins JG., 1993, Vital and Health Statistics
  7. Massey JT., 1989, Design and estimation for the National Health Interview Survey, 1985-94. Vital and Health Statistics, 1
  8. Paty D, 1998, Multiple sclerosis
  9. Minden SL., 2000, J Neurovirol, 6, S160
  10. Beard S, 2003, Health Technology Assessment (Winchester, England), 7, iii
  11. Scheinberg LC, 1980, NY State Med, 80, 1395
  12. Inman RP., 1984, Acta Neurol Scand, 101, 46
  13. National Center for Health Statistics, 1967, Vital and Health Statistics

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Metadata

Authors
Minden, S. L., Frankel, D., Hadden, L., Perloff, J., Srinath, K. P., & Hoaglin, D. C.
Affiliations
  • Brigham and Women's Hospital (US)
  • Abt Global (United States) (US)
  • Brandeis University (US)
Corresponding author
Minden, S L
ORCID
Venue
Multiple Sclerosis Journal
Publisher
SAGE Publications
Published
2006-02
Volume
12
Issue
1
Pages
24-38
ISSN
  • 1352-4585 (ISSN-L)
  • 1477-0970
DOI
10.1191/135248506ms1262oa
OpenAlex
W2084110857
Cited by
272
References
73
Citations by year
2026: 3 · 2025: 3 · 2024: 11 · 2023: 10 · 2022: 14 · 2021: 18 · 2020: 15 · 2019: 17 · 2018: 19 · 2017: 8 · 2016: 14 · 2015: 22 · 2014: 17 · 2013: 18 · 2012: 9
FWCI
5.79
Type
journal article
Language
en
Open access
closed
Licence
journals.sagepub.com/page/policies/text-and-data-mining-license (tdm)
Locations
  • Multiple Sclerosis Journal (publishedVersion)
  • PubMed (publishedVersion)
Funders
National Multiple Sclerosis Society
Topics
  • Health Sciences › Medicine › Clinical Neurology › Multiple Sclerosis Research Studies
  • Social Sciences › Economics, Econometrics and Finance › Economics and Econometrics › Health Systems, Economic Evaluations, Quality of Life
  • Health Sciences › Health Professions › Physical Therapy, Sports Therapy and Rehabilitation › Musculoskeletal pain and rehabilitation
Keywords
multiple sclerosis, longitudinal cohort, sample representativeness, clinical course, relapse rate, disability severity, activities of daily living, work limitations, emotional problems, quality of life, health care utilization, health care costs, disease-modifying agents, natural history of disease, computer-assisted telephone interviewing
MeSH terms
Adolescent, Adult, Aged, Aged, 80 and over, Attitude to Health, Costs and Cost Analysis, Demography, Female, Health Status, Health Surveys, Humans, Interviews as Topic, Longitudinal Studies, Male, Massachusetts, Middle Aged, Multiple Sclerosis

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