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

国家政策对新生儿危重先天性心脏病筛查效果的差异

• 批准号: 10494263
• 负责人: Rie Sakai-Bizmark
• 金额: $ 19.26万
• 依托单位: LUNDQUIST INSTITUTE FOR BIOMEDICAL INNOVATION AT HARBOR-UCLA MEDICAL CENTER
• 依托单位国家: 美国
• 财政年份: 2021
• 资助国家: 美国
• 起止时间: 2021-09-23 至 2024-08-31
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/10494263
• 关键词: Adherence; Birth; Birth Records; Black race; Catheters; Cessation of life; Characteristics; Child Health; Cities; Communities; Databases; Death Rate; Death Records; Detection; Diagnosis; Disease; Early Diagnosis; Early Intervention; Echocardiography; Economics; Eligibility Determination; Ethnic Origin; Ethnic group; Family; Folic Acid; Health; Health Personnel; Health Policy; Healthcare; Heart; Hospital Costs; Hospital Records; Hospitalization; Hospitals; Hour; Human Resources; Individual; Infant; Infant Mortality; Inpatients; Insurance Coverage; Intervention; Interview; Language; Length of Stay; Life; Link; Live Birth; Low income; Mandatory Testing; Measures; Medical Technology; Medicine; Methods; Methylation; Modeling; Morbidity - disease rate; Mothers; National origin; Neighborhoods; Neonatal Screening; New York City; Newborn Infant; Operative Surgical Procedures; Outcome; Patients; Policies; Population; Poverty; Pre-Eclampsia; Pregnancy Rate; Pregnant Women; Prenatal Diagnosis; Prenatal care; Prevalence; Prevention; Procedures; Pulse Oximetry; Questionnaires; Race; Records; Registries; Resolution; Resources; Risk; Rural; Socioeconomic Status; Solvents; Specialist; Surveys; Teaching Hospitals; Technology; Teratogens; Time; Underserved Population; Uninsured; Woman; base; black women; clinical examination; congenital heart disorder; cost; diagnostic tool; disease diagnostic; disorder subtype; distrust; experience; health care availability; health care disparity; health care model; health care service utilization; health data; health inequalities; health outcome disparity; high risk; hospital readmission; improved; improved outcome; infancy; infant death; infant outcome; marginalized community; marginalized population; mortality; mortality statistics; pregnancy related death; prenatal; prevent; racial and ethnic; rural area; rural families; screening; screening panel; screening policy; skills; social; social health determinants; socioeconomics; ultrasound

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.

来自社会经济地位较低群体的婴儿健康结果不平等；没有保险、公共保险，或 农村家庭以及边缘化种族和族裔群体导致令人不安的死亡率统计数据，特别是 在黑人婴儿中。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，需要在第一时间进行手术或导管干预 年。在美国，每年有 7,200 名新生儿发生该病，导致约 1,260 名婴儿死亡，死亡率为 黑人婴儿一岁时患先天性心脏病的几率比白人婴儿高 35-40% 对应的，取决于亚型和州医疗保健模式。目前，随着超声技术的进步 超声心动图是昂贵且需要高级技能的诊断工具，允许某些类型的检查 CCHD 在女性中进行产前诊断。然而，产前检出率存在很大的不平等， 教学医院为 71-100%，非教学医院为 0-39%。 现在，所有 50 个州和华盛顿特区都强制要求使用脉搏血氧仪 (POx) 进行新生儿筛查，这项筛查已添加到 2011 年推荐的统一筛查小组，可以通过简单的操作经济有效地筛查 CCHD 和非侵入性手术。完全访问和正确使用 POx 提供了最后的最佳提示机会 诊断以预防资源贫乏和边缘化社区的死亡和继发性疾病。 对于我们提出的研究，我们假设健康结果将会改善，医疗保健利用率也会提高 历史上服务不足和边缘化人群的减少幅度大于其享有特权的人群的减少幅度 实施州痘筛查指令后，特别是在黑人婴儿中，考虑到 死亡率的高度不平等。我们将检查来自十个州（佛罗里达州、佐治亚州、马萨诸塞州、 密歇根州、密苏里州、内布拉斯加州、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），覆盖了美国三分之一以上的活产婴儿，以评估 国家规定的痘筛查政策对传统上服务不足和服务不足的人群的影响存在差异 边缘化人群及其享有特权的人群。结果将包括[1]由于以下原因导致的婴儿死亡： CCHD，[2] 因 CCHD 漏诊或晚期诊断而导致的婴儿死亡，以及 [3] 期间医疗资源的使用 CCHD 患者的婴儿期情况，例如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 的实现，将被使用。如果强制筛查缩小了改善结果的差距 资源丰富和边缘化人群，特别是黑人婴儿，下一步将是混合方法 R01 将包括登记在内的母婴健康数据联系起来，以确定增加的特征 发生 CCHD 的可能性。通过深度访谈和问卷调查，我们将制定 针对边缘化家庭的干预措施，以促进产前保健和产前 CHD 检测，以及 扩大 POx 筛查。