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.
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.
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