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

Details

• Alternative Title:
  Neuroepidemiology
• Personal Author:
  Nelson, Lorene M. ; Topol, Barbara ; Kaye, Wendy ; Williamson, David ; Horton, D. Kevin ; Mehta, Paul ; Wagner, Todd
• Description:
  Background:
  
  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.
  
  Methods:
  
  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.
  
  Results:
  
  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).
  
  Conclusions:
  
  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.
  
  
• Subjects:
  Administrative Data Amyotrophic Lateral Sclerosis Article Capture-recapture Log-linear Models Motor Neuron Disease Prevalence Prevalence Ratio
• Source:
  Neuroepidemiology. 51(3-4):149-157.
• Pubmed ID:
  30092573
• Pubmed Central ID:
  PMC6250049
• Document Type:
  Journal Article
• Funding:
  CC999999/Intramural CDC HHS/United States
• Volume:
  51
• Collection(s):
  CDC Public Access
• Main Document Checksum:
  urn:sha256:3bb8887995ea9fe3e2b0ff9350fc62bfc31dcf38d8bcdc9802476c6bec59b96a
• Download URL:
  https://stacks.cdc.gov/view/cdc/60794/cdc_60794_DS1.pdf
• File Type:
  [PDF - 331.14 KB ]