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

描述(申请人提供)：出生缺陷很常见，费用很高，而且是致命的。它们影响了大约3%的新生儿，而且它们与巨大的个人和经济成本有关。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他们相关的发病率和死亡率。有证据表明，在照顾和存活有出生缺陷的婴儿方面存在种族/族裔和社会经济差异，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。大多数研究都聚焦于生存方面的种族-民族差异。同样重要的是调查护理和护理方面的差距 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期决定因素。很少有研究考察出生缺陷婴儿之间的这种差异。严格检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的一个关键空白，需要填补。加强对这些差距的了解将有助于开展消除这些差距的翻译努力，从而改善婴儿的存活率和健康以及儿科福祉。我们的建议将通过检查出生缺陷婴儿在护理、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差距。在这项人口规模的分析中，我们将在一个超过300万新生儿的庞大研究人群中检验出生缺陷对婴儿死亡率的贡献差异，其中包括7.5万名患有出生缺陷的婴儿。这项调查将对出生缺陷在整个出生人口中对婴儿总死亡率的贡献的差异--这本身就是一项重大的公共卫生贡献--以及出生缺陷婴儿在特定原因死亡率方面的差异提供一个强有力的理解。在有出生缺陷的婴儿中，我们还将检查种族和SEP对护理和发病率的影响。护理和发病率将以一组不同的变量为特征，例如，护理质量变量，如分娩医院的护理水平，以及与发病率有关的因素，如医院 再次入院，手术时间和住院时间。我们建议在加州1995-2010年间发生的大约300万名新生儿的多样化研究人群中调查我们的目标，其中包括加州出生缺陷监测计划积极确定的大约75,000名出生缺陷婴儿。我们将把这些信息与生命记录(出生证明和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计划，以积累一个全面的数据集，使我们能够满足我们的具体目标。最终，我们的调查将确定人口亚群和与医疗保健相关的结构性因素，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.