Disparities in the effect of state policy for the newborn screening for critical congenital heart diseases

来自较低社会经济群体、无保险、公共保险或 农村家庭和边缘化的种族和族裔群体导致令人不安的死亡率统计数字， 黑人婴儿。因此，我们提出的研究着眼于危重先天性心脏病（CCHD）， 最严重的先天性心脏病，需要手术或基于导管的干预措施，在第一次 年在美国，每年有7,200名新生儿死亡，1,260名婴儿死亡， 先天性心脏病是35-40%之间的高黑人婴儿在他们的第一年比他们的白色 对应方，取决于亚型和国家医疗保健模式。目前，超声和 超声心动图，诊断工具是昂贵的，需要先进的技能，允许某些类型的 妇女产前诊断CCHD。然而，在产前检测率方面存在很大的不平等， 在教学医院为71-100%，在非教学医院为0-39%。 所有50个州和华盛顿特区现在都要求使用脉搏血氧仪（POx）进行新生儿筛查， 在2011年建议统一筛查小组，该小组可以通过一个简单的 和非侵入性手术。对POx的完全访问和正确使用提供了最后的最佳机会， 在资源不足和边缘化的社区，预防死亡和继发性疾病的诊断。 对于我们提出的研究，我们假设健康结果将改善，医疗保健利用率将提高， 历史上得不到充分服务和被边缘化的人口比他们更有特权的人口减少更多 在实施州POx筛查任务后，特别是在黑人婴儿中， 高死亡率的不平等。我们将检查来自十个州（佛罗里达州，佐治亚州，马萨诸塞州， MI、MO、NE、PA、SC、TN、WA）和一个城市（NYC），覆盖美国三分之一以上的活产婴儿，以评估 国家规定的POx筛查政策对传统上服务不足的人群的影响存在差异， 被边缘化的人群和更有特权的人。结果将包括[1]婴儿死亡， CCHD，[2]由于CCHD的漏诊或晚期诊断导致的婴儿死亡，[3] 婴儿期CCHD患者的住院费用和住院时间。差异中的差异 模型，通常用于评估与医疗保健政策相关的结果变化 实现，将被使用。如果强制性筛查缩小了差距，以改善结果之间的不足- 资源和边缘化的人口，特别是黑人婴儿，下一步将是一个混合的方法 R 01将母亲和儿童健康数据（包括登记）联系起来，以确定增加的特征 发展CCHD的可能性。通过深入访谈和问卷调查，我们将开发 针对边缘化家庭的干预措施，以促进产前护理和产前冠心病检测， 扩大POx筛查。

Inequities in health outcomes for infants from lower social economic groups; uninsured, publicly insured, or rural families, and marginalized racial and ethnic groups result in disturbing mortality statistics, especially among Black infants. Therefore our proposed study looks at Critical Congenital Heart Disease (CCHD), the most severe forms of congenital heart disease, requiring surgery or catheter-based interventions within the first year. Occurring in 7,200 newborns and causing about 1,260 infant deaths in the U.S each year, mortality for congenital heart disease is between 35-40% higher among Black infants in their first year than their White counterparts, depending on subtype and state healthcare model. Currently, advances in ultrasound and echocardiography, diagnostic tools that are expensive and require advanced skills, allow certain types of CCHD to be diagnosed prenatally among women. Yet, inequities are substantial in prenatal detection rates, which are 71-100% in teaching hospitals, and 0-39% in non-teaching hospitals. All 50 states and D.C. now mandate newborn screening using Pulse Oximetry (POx), a screening added to the Recommended Uniform Screening Panel in 2011 which can cost-effectively screen for CCHD with a simple and non-invasive procedure. Full access and correct use of POx provides the last best opportunity for prompt diagnosis to prevent mortality and secondary morbidities in under-resourced and marginalized communities. For our proposed study, we hypothesize that health outcomes will improve and healthcare utilization decrease more for historically underserved and marginalized populations than their more privileged counterparts after implementation of state POx screening mandates, and especially among Black infants, given the high mortality inequities. We will examine hospital, birth, and death records from ten states (FL, GA, MA, MI, MO, NE, PA, SC, TN, WA) and one city (NYC), covering over one third of U.S. live births, to assess differences in the effect of state-mandated POx screening policies on traditionally underserved and marginalized populations and their more privileged counterparts. Outcomes will include [1] infant deaths due to CCHD, [2] infant deaths due to missed or late diagnoses of CCHD, and [3] use of healthcare resources during infancy among CCHD patients, such as hospitalization cost and length of stay. A difference-in-differences model, which is commonly used to evaluate the changes in outcomes associated with health care policy implementations, will be used. If mandatory screening narrows gap to improved outcomes among under- resourced and marginalized populations, and especially Black infants, the next step will be a mixed methods R01 to link mother and child health data, including registries, to determine characteristics that increase likelihood of developing CCHDs. Using in-depth interviews and a questionnaire survey, we will develop interventions targeted to marginalized families to promote prenatal care and prenatal CHD detection, and the expansion of POx screening.