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Logo for the Journal of Rehab R&D
Volume 43 Number 1, January/February 2006
Pages 17 — 24

Abstract - Veterans Health Administration multiple sclerosis surveillance registry: The problem of case-finding from administrative databases

William. J. Culpepper II, MA;1-3*Mary Ehrmantraut, RN, MS;2-3 Mitchell T. Wallin, MD, MPH;3-4
Kathleen Flannery, PharmD;2 Douglas D. Bradham, DrPH1-3

1Department of Epidemiology and Preventive Medicine, Healthcare Outcomes Research, University of Maryland School of Medicine, Baltimore, MD; 2Veterans Integrated Service Network 5 Health Services Research and Development Service Center, Research Office, Baltimore Department of Veterans Affairs Medical Center (VAMC), Baltimore, MD; 3Multiple Sclerosis Center of Excellence East, Baltimore VAMC, Baltimore, MD; 4Department of Neurology, Washington, DC, VAMC, Washington, DC
Abstract-Establishment of a national multiple sclerosis (MS) surveillance registry (MSSR) is a primary goal of the Department of Veterans Affairs (VA) MS Center of Excellence. The initial query of Veterans Health Administration (VHA) databases identified 25,712 patients (labeled "VHA MS User Cohort") from fiscal years 1998 to 2002 based on International Classification of Diseases, Ninth Revision, Clinical Modification (ICD-9-CM) code; service-connection for MS; and/or disease-modifying agent (DMA) use. Because of ICD-9-CM limitations, the initial query was overinclusive and resulted in many non-MS cases. Thus, we needed a more rigorous case-finding method. Our gold standard was chart review of the Computerized Patient Record System for the mid-Atlantic VA medical centers. After chart review, we classified patients as not having MS or having MS/possible MS. We also applied a statistical algorithm to classify cases based on service-connection for MS, DMA use, and/or at least one healthcare encounter a year with MS coded as the primary diagnosis. We completed two analyses with kappa coefficient and sensitivity analysis. The first analysis (efficacy) was limited to cases with a definitive classification based on chart review (n = 600). The kappa coefficient was 0.85, sensitivity was 0.93, and specificity was 0.92. The second analysis (effectiveness) included unknown cases that were classified as MS/possible MS (N = 682). The kappa coefficient was 0.82, sensitivity was 0.93, and specificity was 0.90. These findings suggest that the database algorithm reliably eliminated non-MS cases from the initial MSSR population and is a reasonable case-finding method at this intermediate stage of MSSR development.
Key words: case finding, chart review, database, diagnosis, kappa, multiple sclerosis, sensitivity, specificity, surveillance registry, Veterans Health Administration.

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