Relations Between Infants with Single Ventricle Heart Disease, Access to Healthcare, and Survival in Rural Communities

Abstract

Background: An emerging evidence base demonstrates that infants with single ventricle heart disease (SVHD) have increased survival rates, improving their long-term outcomes. A 15% mortality rate remains during the interstage period. Care coordination can impact survival in these infants which in some cases might be complicated by rurality, access to healthcare, and cultural difference. Theoretical Framework: Meleis' middle-range transition theory is the primary theory driving this study. Purpose: To explore the differences within clinical characteristics and mortality between rural and urban infants with SVHD during the interstage period. Through comparison of pre-existing data evaluating rural and non-rural infants with SVHD, the study identified outcome disparities within the following specific aims: To describe the pre-discharge sociodemographic, health status, and clinical characteristics associated with interstage mortality through secondary analysis of existing data of rural and non-rural infants through comparison of the infant's diagnosis, cardiopulmonary bypass times, extracorporeal membrane oxygenation (ECMO), baseline saturations, weight gain, and mode of feeding to interstage mortality. Aim 1 - Seattle Children’s dataset (SCH). Aim 2 - Pediatric Heart Network public datasets (PHN). Methods: A quantitative descriptive design, using secondary analysis of two existing datasets: SCH (2013-2017) and PHN (2005-2009). Findings: For the SCH data, there were 60 infants,45 survived, and 15 died. Of the 15 infants who died, 11 died after the Norwood procedure but before discharge home. Infants who required ECMO had a greater risk of dying. Birthweight and number of emergency room visits were protective, meaning those infants were more likely to survive. In the PHN data, of 281 infants, 227 survived, and 54 died. Of the 54 infants who died, 39 died after the Norwood procedure but before discharge home. A statistically significant greater risk of mortality was found in infants who identified as Hispanic, required ECMO postoperatively, had a longer time on cardiopulmonary bypass, or were on oxygen at discharge. Infants who weighed more at birth, gained more weight throughout their Norwood hospital course, were orally fed at the time of discharge, and had a higher socioeconomic score were less likely to die. Conclusions: This study illuminated the role of ECMO and bypass time, noting these are significant risks to survival. Birthweight, weight-gain, mode-of-feeding, SES, and race were overall long-term variables that, all except race, were protective of survival. It is important to prepare parents for the transitions involved with their infants, beginning as early as the Norwood procedure.