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的婴儿的健康结果不公平；未参保、公共参保或 农村家庭以及被边缘化的种族和族裔群体造成令人不安的死亡率统计，尤其是 在黑人婴儿中。因此，我们建议的研究着眼于危重先天性心脏病(CCHD) 大多数严重形式的先天性心脏病，需要手术或基于导管的干预在第一 年。在美国，每年发生在7200名新生儿中，并导致约1260名婴儿死亡， 出生一岁的黑人婴儿患先天性心脏病的几率比白人婴儿高35%-40% 对应者，取决于子类型和州医疗保健模式。目前，超声和医疗技术的进展 超声心动图是一种昂贵且需要高级技能的诊断工具，它允许某些类型的心脏 在女性中进行产前诊断的CCHD。然而，在产前检测率方面存在很大的不平等， 教学医院为71-100%，非教学医院为0-39%。 所有50个州和华盛顿现在都强制使用脉搏血氧饱和度(POX)进行新生儿筛查，这项筛查增加了 2011年推荐的统一筛查小组，可通过简单的 和非侵入性手术。完全访问和正确使用POX为提示提供了最后的最佳机会 在资源不足和边缘化的社区进行诊断，以预防死亡和继发性疾病。 在我们提议的研究中，我们假设健康结果将改善，医疗保健利用率将会提高 对于历史上服务不足和边缘化的人群，比起他们更有特权的人群，减少的更多 在执行国家痘筛查任务后，特别是在黑人婴儿中，给予 高死亡率的不平等。我们将检查10个州(佛罗里达州、佐治亚州、马萨诸塞州、 密歇根州、密苏里州、东北部、宾夕法尼亚州、南卡罗来纳州、田纳西州、华盛顿州)和一个城市(纽约市)，覆盖超过三分之一的美国活产儿 国家强制的痘筛查政策对传统上服务不足的人和 被边缘化的人群和他们更有特权的对应者。结果将包括[1]婴儿因以下原因死亡 CCHD，[2]因漏诊或延误诊断而导致的婴儿死亡，以及[3]卫生保健资源的使用 CCHD患者的婴儿期，如住院费用和住院时间。差异中的差异 模型，该模型通常用于评估与医疗保健政策相关的结果的变化 实现，将使用。如果强制性筛查缩小差距，改善未成年儿童的结果 资源丰富和边缘化的人群，特别是黑人婴儿，下一步将是混合方法 R01链接母婴健康数据，包括登记，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，我们将制定 针对边缘化家庭的干预措施，以促进产前护理和产前CHD检测，以及 扩大痘筛查工作。

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.