Academic journal article Journal of Rehabilitation Research & Development

Veterans Health Administration Multiple Sclerosis Surveillance Registry: The Problem of Case-Finding from Administrative Databases

Academic journal article Journal of Rehabilitation Research & Development

Veterans Health Administration Multiple Sclerosis Surveillance Registry: The Problem of Case-Finding from Administrative Databases

Article excerpt

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.

INTRODUCTION

Multiple sclerosis (MS) is the most common progressive neurological disease of young adults [1-3]. It is of major interest to the Department of Veterans Affairs (VA) because of the associated high rates of healthcare use. In late 2002, the Veterans Health Administration (VHA) funded two MS Centers of Excellence (MSCoEs) to conduct research and education for improving the clinical care of veterans with MS. On the East Coast, the MSCoE is located at the VA medical center (VAMC) in Baltimore, Maryland; on the West Coast, the MSCoE is shared between the VAMCs in Portland, Oregon, and Seattle, Washington. A primary goal of the MSCoEs was development of an MS surveillance registry (MSSR). The MSSR would provide researchers with a pool of veterans for future studies of unresolved epidemiological, clinical, and quality-of-care issues in MS diagnosis, treatment, and management. Ultimately, the MSSR would facilitate a better systemwide understanding of the needs of MS patients. This mandate seemed feasible. However, case finding from extant VHA data presents unique challenges [4-7], especially when the diagnosis cannot be made based on specific, objective medical tests and/or procedures. This challenge is especially true for diagnoses that are made clinically, such as MS. Another problem is reliance on diagnostic coding schemes with insufficient taxonomic detail to allow adequate distinction between confirmed clinical diagnoses and suspected diagnoses that must be "ruled out." For example, the International Classification of Diseases, Ninth Revision, Clinical Modification (ICD-9-CM) provides only one 3-digit code (340) for suspected MS, evaluations to rule out MS, and clinically definite MS.

We initially identified cases through a retrospective query of extant VHA data sources based on ICD-9-CM MS diagnostic code or disease-modifying agent (DMA) use. This query identified 25,712 veterans from fiscal year (FY) 1998 to FY2002 who had at least one healthcare encounter in which MS was coded, had a service-connected disability for MS, or used a DMA. …

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