Population Estimates of Sickle Cell Disease in the US

Population Estimates of Sickle Cell Disease in the US
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DOI:
10.1016/j.amepre.2009.12.022
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发表时间:
2010-04-01
影响因子:
5.5
通讯作者:
Hassell, Kathryn L.
Hassell, Kathryn L.
中科院分区:
医学2区
文献类型:
--
作者:
Hassell, Kathryn L.

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背景资料:在美国,患有镰状细胞病(SCD)的个体的数量是未知的。疾病负担、医疗保健问题和政策的确定最好通过SCD人群的代表性估计来服务。目的:通过使用最近的美国人口普查和出生队列SCD患病率(通过集中报告新生儿血红蛋白病普遍筛查获得)更新SCD人群估计值,方法:根据2008年美国人口普查,使用来自国家新生儿筛查信息系统的总的、非洲裔美国人和西班牙裔出生队列疾病患病率,估计国家和州SCD人群。使用疾病预防控制中心的压缩死亡率报告和已发表的患者队列生存信息,对镰状细胞性贫血的早期死亡率进行了校正。结果如下:根据出生队列疾病患病率,全国SCD人口估计数为104,000至138,900,但校正早期死亡率后为72,000至98,000。在现有数据中注意到一些局限性,特别是成人SCD死亡率。即使考虑到早期死亡率对估计的影响,也可能接近100,000人缺乏高质量的数据限制了适当的估计州与州之间的差异可能妨碍将州特定的信息应用于其他州或整个国家标准化的收集和集中报告,即监视系统,对于评估美国的规模和组成是必要的。SCD人群(Am J Prey Med 2010,38(4S)S512-S521)(C)2010年美国预防医学杂志
Background: The number of individuals with sickle cell disease (SCD) in the U S is unknown Determination of burden of disease, healthcare issues, and policies is best served by representative estimations of the SCD populationPurpose: To update SCD population estimates by using recent U.S. Census and birth-cohort SCD prevalence for at-risk populations as available through the centralized reporting of universal newborn screening for hemoglobinopathies, with an effort to demonstrate the potential effect of early mortality.Methods: National and state SCD populations were estimated based on the 2008 U S Census, using total, African-American, and Hispanic birth-cohort disease prevalence derived from the National Newborn Screening Information System. Estimates were corrected for early mortality for sickle cell anemia using data from the CDC's Compressed Mortality Report and published patient-cohort survival information. Results: National SCD population estimates ranged from 104,000 to 138,900, based on birth-cohort disease prevalence, but from 72,000 to 98,000 when corrected for early mortality Several limitations were noted in the available data, particularly for SCD mortality in adults.Conclusions: The number of individuals with SCD in the U S. may approach 100,000, even when accounting for the effect of early mortality on estimations A paucity of high-quality data limits appropriate estimation State-to-state variability may preclude application of state-specific information to other states or to the nation as a whole Standardized collection and centralized reporting, a surveillance system, will be necessary to assess the size and composition of the U S. SCD population (Am J Prey Med 2010,38(4S) S512-S521) (C) 2010 American Journal of Preventive Medicine