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名婴儿出生体重低于1500克，他们的护理是一个快速增长的公共卫生问题。确保这一高危群体的患者在出院后得到适当的护理已成为儿科的一个重要目标。然而，最近的数据表明，在为早产儿提供的护理方面存在种族差异。对这些差异的一个潜在解释是父母对医疗保健系统和医疗保健提供者的信任程度。在成年人群中的研究表明，病人的信任在观察到的种族差异在医疗保健中起着关键作用，提高信任，从而提供了一个可行的机制，以减少这些差距。鉴于目前缺乏对早产儿从新生儿重症监护室出院后护理质量的种族差异的了解，本项目建议（1）确定种族对早产儿出院后护理过程和结果测量的相对贡献，以及（2）检查与卫生保健相关的不信任对护理中种族差异的贡献，将对医疗保健的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，该项目将检查在费城儿童医院附属的32个门诊儿科站点之一接受护理的出院早产儿的大队列，每年在城市和农村地区看到超过180，000名儿童和500至1000名新生早产儿。这些网站通过EpicCare（R）提供的电子病历系统连接，该系统允许在整个中心网络中统一收集和提取数据。然后，在新生儿重症监护病房出院后的头两年内，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对护理种族差异的期望的相对贡献。Robins et al的边际结构模型方法将用于控制在研究时间范围内发生一次的潜在混杂因素，如新生儿并发症，或在研究时间范围内发生变化的潜在混杂因素，如住院和家庭对医疗保健系统的期望变化。由于样本量较大，本研究将有把握发现结局的微小差异。这项研究的结果将有助于制定和实施具体政策，以减少门诊儿科护理中的种族差异。减少这些差距，那么，将导致更高质量的护理，所有高风险，出院的早产儿。公共卫生相关性：种族差异仍然是向所有患者提供高质量医疗保健的主要障碍。本研究将探讨从新生儿重症监护病房出院后的头两年，早产儿护理结果的差异的各种潜在解释。通过了解这些结果中种族差异的基本解释，特别是家庭对医疗保健系统的信任，我们可以帮助制定干预措施，以减少这些护理差异。

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.