Disparities in Care, Morbidity & Survival Among Infants with Birth Defects

描述（由申请人提供）：出生缺陷是常见的，昂贵的，致命的。它们影响了所有出生的大约3%，并且与巨大的个人和财务成本有关。它们是婴儿死亡的头号原因，占美国婴儿死亡的20%。改善对出生缺陷婴儿的护理可以降低其相关的发病率和死亡率。有证据表明，在出生缺陷婴儿的护理和生存方面存在种族/民族和社会经济差异，尽管一般来说，很少有人关注他们的调查，更不用说消除他们了。大多数研究都集中在生存的种族-民族差异。还必须调查护理方面的差距， 出生缺陷婴儿的发病率。护理和发病率是婴儿存活和长期健康的重要近端决定因素。很少有研究调查出生缺陷婴儿的这种差异。严格审查出生缺陷婴儿在护理、发病率和存活率方面的差异是婴儿健康领域需要填补的一个关键空白。提高对这些差异的理解将使消除这些差异的转化努力得以发展，从而提高婴儿的存活率和健康，以及儿科的福祉。我们的提案将通过检查出生缺陷婴儿的护理，发病率和死亡率方面的种族-民族和社会经济差异来解决这一研究空白。在这个人口规模的分析中，我们将在一个超过300万出生的巨大基础研究人群中检查出生缺陷对婴儿死亡率贡献的差异，其中包括> 75，000名出生缺陷婴儿。这项调查将提供一个强大的理解的差距，出生缺陷的贡献，整体婴儿死亡率在整个出生人口-一个主要的公共卫生贡献本身-以及在特定原因的死亡率，出生缺陷的婴儿中的非典型肺炎。在有出生缺陷的婴儿中，我们还将研究护理和发病率如何受到种族-民族和SEP的影响。护理和发病率将由一组不同的变量来表征，例如，护理质量变量，如分娩医院的护理水平和发病率相关因素，如医院 再次入院、手术时间和住院时间。我们建议在1995年至2010年期间加州约300万例出生婴儿的多样化研究人群中调查我们的目标，其中包括约75，000名出生缺陷婴儿，由加州出生缺陷监测计划积极确定。我们将把这些信息与生命记录（出生证明、婴儿和胎儿死亡证明）和出院数据联系起来，这两个数据都来自全州范围的项目，以积累一个全面的数据集，使我们能够实现我们的特定目标。最终，我们的调查将确定人口的亚组和与卫生保健有关的结构因素，这些因素可以作为加强监测、干预或改变的目标，以改善出生缺陷婴儿的生存和健康。

DESCRIPTION (provided by applicant): Birth defects are common, costly, and deadly. They affect approximately 3% of all births, and they are associated with huge personal and financial costs. They are the number one cause of infant mortality, accounting for 20% of infant deaths in the U.S. Improvements in the care of infants with birth defects can reduce their associated morbidity and mortality. Evidence suggests that racial/ethnic and socioeconomic disparities exist in the care and survival of infants with birth defects, although in general little attention has ben directed toward their investigation, much less their elimination. Most studies have focused on racial- ethnic disparities in survival. It is also important to investigate disparities in care and morbidity among infants with birth defects. Care and morbidity are important proximal determinants of infant survival, as well as long- term health. Very few studies have examined such disparities among infants born with birth defects. Rigorous examination of disparities in care, morbidity and survival among infants with birth defects is a critical gap in the field of infnt health that needs to be filled. Improved understanding of these disparities will enable the development of translational efforts to eliminate them, and thus improve infant survival and health, and pediatric well-being. Our proposal will address this research gap by examining racial-ethnic and socioeconomic disparities in the care, morbidity and mortality of infants born with birth defects. In this population-scale analysis we will examine disparities in the contributin of birth defects to infant mortality in a huge underlying study population of more than 3 million births, which includes >75,000 infants with birth defects. This inquiry will provide a robust understanding of disparities in the contribution of birth defects to overall infant mortality in th entire birth population - a major public health contribution in and of itself - as well as disparites in cause-specific mortality, among infants born with birth defects. Among infants with birth defects, we will also examine how care and morbidity are influenced by race-ethnicity and SEP. Care and morbidity will be characterized by a diverse set of variables, e.g., quality of care variables such as level of care of delivery hospital and morbidity-related factors such as hospital re-admissions, timing of surgery and length of stay. We propose to investigate our aims within a diverse study population of approximately three million births that occurred in California from 1995-2010, which includes approximately 75,000 babies born with birth defects, actively ascertained by the California Birth Defects Monitoring Program. We will link this information with vital records (birth certificates and infant and fetal death certificates) and hospital discharge data, both of which are derived from state-wide programs, to amass a comprehensive dataset that will enable us to answer our specific aims. Ultimately, our investigation will identify sub-groups of the population and health care- related structural factors that could be targeted for heightened surveillance, intervention or change, in order to improve the survival and health of babies born with birth defects.