Comparing the national death index and the social security administration's death master file to ascertain death in HIV surveillance

David B. Hanna, Melissa R. Pfeiffer, Judith E. Sackoff, Richard M. Selik, Elizabeth M. Begier, Lucia V. Torian

Research output: Contribution to journalArticle

21 Citations (Scopus)

Abstract

Objectives. New York City (NYC) maintains a population-based registry of people with human immunodeficiency virus (HIV) infection to monitor the epidemic and inform resource allocation. We evaluated record linkages with the National Death Index (NDI) and the Social Security Administration's Death Master File (SSDMF) to find deaths occurring from 2000 through 2004. Methods. We linked records from 32,837 people reported with HIV and not previously known to be dead with deaths reported in the NDI and the SSDMF. We calculated the kappa statistic to assess agreement between data sources. We performed subgroup analyses to assess differences within demographic and transmission risk subpopulations. We quantified the benefit of linkages with each data source beyond prior death ascertainment from local vital statistics data. Results. We discovered 1,926 (5.87%) deaths, which reduced the HIV prevalence estimate in NYC by 2.03%, from 1.19% to 1.16%. Of these, 458 (23.78%) were identified only from NDI, and 305 (15.84%) only from SSDMF. Agreement in ascertainment between sources was substantial (kappa = [K] 0.74, 95% confidence interval [CI] 0.72, 0.76); agreement was lower among Hispanic people (K=0.65, 95% CI 0.62, 0.69) and people born outside the U.S. (K=0.60, 95% CI 0.52, 0.68). We identified an additional 13.62% of deaths to people reported with HIV in NYC; white people and men who have sex with men were disproportionately likely to be underascertained without these linkages (p<0.0001). Conclusion. Record linkages with national databases are essential for accurate prevalence estimates from disease registries, and the SSDMF is an inexpensive means to supplement linkages with the NDI to maximize death ascertainment.

Original languageEnglish (US)
Pages (from-to)850-860
Number of pages11
JournalPublic Health Reports
Volume124
Issue number6
StatePublished - Nov 2009
Externally publishedYes

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United States Social Security Administration
HIV
Information Storage and Retrieval
Confidence Intervals
Registries
Vital Statistics
Resource Allocation

ASJC Scopus subject areas

  • Public Health, Environmental and Occupational Health

Cite this

Comparing the national death index and the social security administration's death master file to ascertain death in HIV surveillance. / Hanna, David B.; Pfeiffer, Melissa R.; Sackoff, Judith E.; Selik, Richard M.; Begier, Elizabeth M.; Torian, Lucia V.

In: Public Health Reports, Vol. 124, No. 6, 11.2009, p. 850-860.

Research output: Contribution to journalArticle

Hanna, David B. ; Pfeiffer, Melissa R. ; Sackoff, Judith E. ; Selik, Richard M. ; Begier, Elizabeth M. ; Torian, Lucia V. / Comparing the national death index and the social security administration's death master file to ascertain death in HIV surveillance. In: Public Health Reports. 2009 ; Vol. 124, No. 6. pp. 850-860.
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abstract = "Objectives. New York City (NYC) maintains a population-based registry of people with human immunodeficiency virus (HIV) infection to monitor the epidemic and inform resource allocation. We evaluated record linkages with the National Death Index (NDI) and the Social Security Administration's Death Master File (SSDMF) to find deaths occurring from 2000 through 2004. Methods. We linked records from 32,837 people reported with HIV and not previously known to be dead with deaths reported in the NDI and the SSDMF. We calculated the kappa statistic to assess agreement between data sources. We performed subgroup analyses to assess differences within demographic and transmission risk subpopulations. We quantified the benefit of linkages with each data source beyond prior death ascertainment from local vital statistics data. Results. We discovered 1,926 (5.87{\%}) deaths, which reduced the HIV prevalence estimate in NYC by 2.03{\%}, from 1.19{\%} to 1.16{\%}. Of these, 458 (23.78{\%}) were identified only from NDI, and 305 (15.84{\%}) only from SSDMF. Agreement in ascertainment between sources was substantial (kappa = [K] 0.74, 95{\%} confidence interval [CI] 0.72, 0.76); agreement was lower among Hispanic people (K=0.65, 95{\%} CI 0.62, 0.69) and people born outside the U.S. (K=0.60, 95{\%} CI 0.52, 0.68). We identified an additional 13.62{\%} of deaths to people reported with HIV in NYC; white people and men who have sex with men were disproportionately likely to be underascertained without these linkages (p<0.0001). Conclusion. Record linkages with national databases are essential for accurate prevalence estimates from disease registries, and the SSDMF is an inexpensive means to supplement linkages with the NDI to maximize death ascertainment.",
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