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Nelson, Lorene M.; Topol, Barbara; Kaye, Wendy; Williamson, David; Horton, D. Kevin; Mehta, Paul; Wagner, Todd

Estimation of the Prevalence of Amyotrophic Lateral Sclerosis in the United States Using National Administrative Healthcare Data from 2002 to 2004 and Capture-Recapture Methodology

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  • Medientyp: E-Artikel
  • Titel: Estimation of the Prevalence of Amyotrophic Lateral Sclerosis in the United States Using National Administrative Healthcare Data from 2002 to 2004 and Capture-Recapture Methodology
  • Beteiligte: Nelson, Lorene M.; Topol, Barbara; Kaye, Wendy; Williamson, David; Horton, D. Kevin; Mehta, Paul; Wagner, Todd
  • Erschienen: S. Karger AG, 2018
  • Erschienen in: Neuroepidemiology
  • Sprache: Englisch
  • DOI: 10.1159/000488798
  • ISSN: 0251-5350; 1423-0208
  • Schlagwörter: Neurology (clinical) ; Epidemiology
  • Entstehung:
  • Anmerkungen:
  • Beschreibung: <jats:p>&lt;b&gt;&lt;i&gt;Background:&lt;/i&gt;&lt;/b&gt; National administrative healthcare data may be used as a case-finding method for prevalence studies of chronic disease in the United States, but the completeness of ascertainment likely varies depending on the disease under study. &lt;b&gt;&lt;i&gt;Methods:&lt;/i&gt;&lt;/b&gt; We used 3 case-finding sources (Medicare, Medicaid, and Veterans Administration data) to estimate the prevalence of amyotrophic lateral sclerosis (ALS) in the United States for 2002–2004, and applied the capture-recapture methodology to estimate the degree of under-ascertainment when relying solely on these sources for case identification. &lt;b&gt;&lt;i&gt;Results:&lt;/i&gt;&lt;/b&gt; Case-finding completeness was 76% overall and did not vary by race, but was lower for males (77%) than for females (88%), and lower for patients under age 65 (66%) than patients over age 65 (79%). The uncorrected ALS prevalence ratio was 2.8/100,000 in 2002, 3.3/100,000 in 2003, and 3.7/100,000 in 2004. After correcting for under-ascertainment, the annual prevalence increased by approximately 1 per 100,000 to 3.7/100,000 in 2002 (95% CI 3.66–3.80), 4.4/100,000 in 2003 (95% CI 4.34–4.50), and 4.8/100,000 in 2004 (95% CI 4.76–4.91). &lt;b&gt;&lt;i&gt;Conclusions:&lt;/i&gt;&lt;/b&gt; Federal healthcare claims databases ascertained are a very efficient method for identifying the majority of ALS-prevalent cases in the National ALS Registry, and may be enhanced by having patients self-register through the registry web portal.</jats:p>