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. 2018;51(3-4):149-157.
doi: 10.1159/000488798. Epub 2018 Aug 9.

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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Free PMC article

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

Lorene M Nelson et al. Neuroepidemiology. .
Free PMC article

Abstract

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.

Keywords: Administrative data; Amyotrophic lateral sclerosis; Capture-recapture; Log-linear models; Motor neuron disease; Prevalence; Prevalence ratio.

Figures

Fig. 1.
Fig. 1.
Case ascertainment overlap, prevalent cases, 2003.
Fig. 2.
Fig. 2.
Number of ALS cases in 2003 by sex, age, and race, corrected for case undercount using the capture-recapture method. ALS, amyotrophic lateral sclerosis.
Fig. 3.
Fig. 3.
Number of ALS cases, 2002–2004, corrected for case ascertainment using the capture-recapture method. ALS, amyotrophic lateral sclerosis.
Fig. 4.
Fig. 4.
Annual ALS prevalence estimates, 2002–2004, corrected for case undercount using the capture-recapture method. ALS, amyotrophic lateral sclerosis.

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