Defining Sickle Cell Disease Mortality Using a Population-Based Surveillance System, 2004 through 2008

Objective. Population-based surveillance data from California and Georgia for years 2004 through 2008 were linked to state death record files to determine the all-cause death rate among 12,143 patients identified with sickle cell disease (SCD). Methods. All-cause death rates, by age, among these SCD...

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Bibliographic Details
Published in:Public health reports (1974) 2016-03, Vol.131 (2), p.367-375
Main Authors: Paulukonis, Susan T., Eckman, James R., Snyder, Angela B., Hagar, Ward, Feuchtbaum, Lisa B., Zhou, Mei, Grant, Althea M., Hulihan, Mary M.
Format: Article
Language:English
Subjects:
Adolescent
Adult
African Americans
Age
Age Distribution
Aged
Anemia, Sickle Cell - diagnosis
Anemia, Sickle Cell - ethnology
Anemia, Sickle Cell - mortality
Black or African American - statistics & numerical data
California - epidemiology
Cause of Death
Child
Child, Preschool
Comparative analysis
Death
Death Certificates
Female
Georgia - epidemiology
Health risk assessment
Health risks
Humans
Identification methods
Infant
Infant, Newborn
Male
Medical Record Linkage
Middle Aged
Mortality
Mortality rates
Neonatal Screening
Patients
Population
Population Surveillance - methods
Sex Distribution
Sickle cell disease
Surveillance
Young Adult
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Summary:Objective. Population-based surveillance data from California and Georgia for years 2004 through 2008 were linked to state death record files to determine the all-cause death rate among 12,143 patients identified with sickle cell disease (SCD). Methods. All-cause death rates, by age, among these SCD patients were compared with all-cause death rates among both African Americans and the total population in the two states. All-cause death rates were also compared with death rates for SCD derived from publicly available death records: the compressed mortality files and multiple cause of death files. Results. Of 12,143 patients identified with SCD, 615 patients died. The all-cause mortality rate for the SCD population was lower than the all-cause mortality rate among African Americans and similar to the total population all-cause mortality rates from birth through age 4 years, but the rate was higher among those with SCD than both the African American and total population rates from ages 5 through 74 years. The count of deceased patients identified by using population-based surveillance data (n=615) was more than twice as high as the count identified in compressed mortality files using SCD as the underlying cause of death alone (n=297). Conclusion. Accurate assessment of all-cause mortality and age at death requires long-term surveillance via population-based registries of patients with accurately diagnosed SCD.
ISSN:0033-3549
1468-2877
DOI:10.1177/003335491613100221