Scientific Abstracts from the Phoenix Children’s 13th Annual Fetal Cardiology Symposium December 8–11, 2022 at The Phoenician, Scottsdale, AZ

Abstract

Best Abstract AwardPatient-Reported Barriers to Prenatal Diagnosis of Congenital Heart Defects: A Prospective, Mixed-Methods StudyAuthors: Sivakumar, Adithya, BE;1 Burton, Shelvonne;2 Gandhi, Rupali, MD, JD;3 Yee, Lynn, MD, MPH;4 Johnson, Joyce, MD, MSc;5 Patel, Angira, MD, MPH;2 Woo, Joyce, MD, MS.21Rush University, Chicago, IL. 2Ann & Robert H. Lurie Children’s Hospital, Northwestern University Feinberg School of Medicine, Chicago, IL. 3Advocate Children’s Hospital, Chicago, IL. 4Northwestern University Feinberg School of Medicine, Chicago, IL. 5Johns Hopkins All Children’s Hospital, Baltimore, MD. Research performed at Ann & Robert H. Lurie Children’s Hospital, Northwestern University Feinberg School of Medicine, Chicago, IL.Background/Hypothesis: The sensitivity of fetal echocardiography in the prenatal diagnosis of congenital heart defects (CHDs) approaches 90%, yet national prenatal diagnosis rates of CHD are only 30–50%. Previous analyses with large administrative data have revealed socioeconomic factors, such as public insurance, to be associated with disparate prenatal diagnosis rates. More granular, prospective data can identify modifiable barriers to prenatal CHD diagnosis. This study elucidates patient-reported barriers to prenatal CHD diagnosis within the Chicagoland area. Materials and Methods: Semi-structured telephone surveys were administered to mothers of children who had CHD surgery at Lurie Children’s Hospital between 2019–2020. The survey was developed using a mixed-methods, convergent parallel design with closed and open-ended questions about perceived barriers to prenatal CHD diagnosis. Quantitative data were summarized with descriptive statistics, while qualitative data were coded to thematic domains. Results: In total, 39 respondents completed the survey. Of these, 26% (n = 10) were of Hispanic ethnicity, 5% (n = 2) were of non-Hispanic Black race, 67% (n = 26) received fetal echocardiogram, and 64% (n = 25) reported a barrier to prenatal diagnosis. Reported barriers were matched into three themes (Fig. 1): perceived inefficiency with prenatal care (n = 7, 18%), difficulty obtaining access to a fetal echocardiogram (n = 5, 13%), and no fetal echocardiogram obtained (n = 13, 33%). Within these themes, responses included missed diagnoses by obstetric ultrasound or fetal echocardiogram (n = 12), lack of prenatal or maternal–fetal medicine care (n = 2), difficulty obtaining insurance approval (n = 2), and distance to care (n = 2). Of the reported barriers, only two were specifically related to the COVID-19 pandemic. Conclusions: Barriers to prenatal diagnosis of CHD are not limited to missed diagnoses by prenatal imaging. Public health barriers such as difficulty accessing obstetric or maternal–fetal-medicine care, geographic barriers such as distance to care, and systems-level barriers such as insurance approval, are modifiable targets for intervention by institutional, local, and regional healthcare policy.Fig. 1Categorization of barriers reported among mothers of children diagnosed with congenital heart diseaseFull size imageTable 1 HLHS characteristics and outcomes by FR-VTI subgroupsFull size table