Parental Trust and Racial Disparities in the Care of Discharged Premature Infants

描述（由申请人提供）：美国每年有超过57,000名出生体重低于1500克的婴儿，他们的护理是一个迅速增长的公共卫生问题。确保这一高危人群在出院后得到适当的护理已成为儿科学的一个重要目标。然而，最近的数据表明，在为早产儿提供护理方面存在种族差异。造成这些差异的一个可能的解释是父母对卫生保健系统和卫生保健提供者的信任程度。对成年人群的研究表明，患者信任在观察到的医疗保健种族差异中起着关键作用；因此，改善信任可能提供一种可行的机制来减少这些差距。鉴于目前缺乏对早产儿从新生儿重症监护病房出院后护理质量的种族差异的深入了解，本项目提出(1)确定种族对早产儿出院后护理过程和结果测量变化的相对贡献，以及(2)检查医疗保健相关不信任对护理中的种族差异的贡献。将医疗保健不信任置于可能导致这种差异的其他患者、提供者和系统因素的更广泛背景下。为了回答这些问题，本项目将对在费城儿童医院附属的32个儿科门诊点之一接受护理的出院早产儿进行研究，该医院每年在城市和农村地区看到超过18万名儿童和500至1000名新发早产儿。这些站点通过EpicCare(R)提供的电子病历系统连接起来，该系统允许在整个中心网络中统一收集和提取数据。在新生儿重症监护室出院后的头两年，将对家庭进行三次调查，以确定父母信任、沟通方式和医疗保健系统的期望对护理中的种族差异的相对贡献。罗宾斯等人的边际结构模型方法将用于控制潜在的混杂因素，这些混杂因素要么在研究的时间框架内发生一次，如新生儿并发症，要么在研究的时间框架内发生变化，如住院和家庭对医疗保健系统期望的变化。由于样本量大，本研究将有助于发现结果的微小差异。本研究的结果将允许制定和实施具体政策，以减少门诊儿科护理中的种族差异。因此，减少这些差异将为所有高危出院早产儿提供更高质量的护理。公共卫生相关性：种族差异仍然是向所有患者提供高质量卫生保健的主要障碍。本研究将探讨新生儿重症监护病房出院后头两年早产儿护理结果差异的各种潜在解释。通过了解这些结果中种族差异的潜在解释，特别是家庭对医疗保健系统的信任，我们可以帮助开发干预措施来减少这些护理差异。

DESCRIPTION (provided by applicant): With over 57,000 infants born every year in the United States with a birth weight under 1500 grams, their care is a rapidly growing public health concern. Ensuring that this high-risk group of patients receives appropriate care after discharge has become an important goal in pediatrics. Recent data, though, suggest the presence of racial disparities in the care provided to premature infants. One of the potential explanations for these differences is the degree of parental trust in the health care system and health care providers. Studies in adult populations suggest that patient trust plays a key role in observed racial disparities in health care; improving trust may thus provide a feasible mechanism to reduce these disparities. Given the current lack of insight into racial disparities in the quality of care delivered to premature infants after discharge from the neonatal intensive care unit, this project proposes (1) to identify the relative contribution of race to variations in process and outcome measures of post-discharge care for the premature infant, and (2) to examine the contribution of health care-related distrust to racial disparities in care, placing health care distrust within the broader context of other patient, provider and system factors that may contribute to such disparities. To answer these questions, this project will examine a large cohort of discharged premature infants receiving care at one of 32 outpatient pediatric sites affiliated with The Children's Hospital of Philadelphia, where over 180,000 children and 500 to 1000 new premature infants are seen each year in urban and rural settings. These sites are linked by an electronic medical record system provided by EpicCare(R), which allows for unified collection and abstraction of data across the entire network of centers. Families will then be surveyed three times during the first two years after discharge from the neonatal intensive care unit to determine the relative contribution of parental trust, communication styles, and expectations from the health care system on racial differences in care. The marginal structural model approach of Robins et al will be used to control for potential confounders that occur either once during the time frame of the study, such as neonatal complications, or vary over the time frame of the study, such as hospital admissions and changes in a family's expectations from the health care system. With the large sample size, this study will be powered to find small differences in outcomes. Results from this study will allow for the development and implementation of specific policies to reduce racial disparities in outpatient pediatric care. Reducing these disparities, then, will result in higher quality care to all high-risk, discharged premature infants. PUBLIC HEALTH RELEVANCE: Racial disparities continue to be a major impediment to the delivery of high quality health care to all patients. This study will examine various underlying explanations for such disparities in the outcomes of care provided to premature infants in the first two years after discharge from the neonatal intensive care unit. By understanding these underlying explanations for the racial disparities in these outcomes, particularly families' trust in the health care system, we can aid in the development of interventions to reduce these differences in care.