Patient-reported barriers to prenatal diagnosis of congenital heart defects: A mixed-methods study

Authors

Joyce L. Woo, Division of Cardiology, Department of Pediatrics, Ann & Robert H. Lurie Children's Hospital of Chicago, Northwestern University Feinberg School of Medicine, Chicago, Illinois, USA.
Shelvonne Burton, Division of Cardiology, Department of Pediatrics, Ann & Robert H. Lurie Children's Hospital of Chicago, Northwestern University Feinberg School of Medicine, Chicago, Illinois, USA.
Tara Iyengar, Advocate Aurora HealthFollow
Adithya Sivakumar, Division of Cardiology, Department of Pediatrics, Ann & Robert H. Lurie Children's Hospital of Chicago, Northwestern University Feinberg School of Medicine, Chicago, Illinois, USA.
Sarah Spiewak, Advocate Aurora HealthFollow
Renee Wakulski, Advocate Aurora HealthFollow
William A. Grobman, Division of Maternal-Fetal-Medicine, Department of Obstetrics and Gynecology, The Ohio State University College of Medicine, Columbus, Ohio, USA.
Matthew M. Davis, Department of Medical Social Sciences, Northwestern University Feinberg School of Medicine, Chicago, Illinois, USA.
Lynn M. Yee, Division of Maternal-Fetal-Medicine, Department of Obstetrics and Gynecology, Northwestern University Feinberg School of Medicine, Chicago, Illinois, USA.
Angira Patel, Division of Cardiology, Department of Pediatrics, Ann & Robert H. Lurie Children's Hospital of Chicago, Northwestern University Feinberg School of Medicine, Chicago, Illinois, USA.
Joyce T. Johnson, Division of Cardiology, Department of Pediatrics, Johns Hopkins All Children's Hospital, St. Petersburg, Florida, USA.
Sheetal Patel, Division of Cardiology, Department of Pediatrics, Ann & Robert H. Lurie Children's Hospital of Chicago, Northwestern University Feinberg School of Medicine, Chicago, Illinois, USA.
Rupali Gandhi, Advocate Aurora HealthFollow

Recommended Citation

Woo JL, Burton S, Iyengar T, et al. Patient-reported barriers to prenatal diagnosis of congenital heart defects: A mixed-methods study. Prenat Diagn. 2024;44(1):57-67. doi:10.1002/pd.6481

Affiliations

Advocate Christ Children's Hospital

Abstract

Objective:To ascertain patient-reported, modifiable barriers to prenatal diagnosis of congenital heart defects (CHDs).

Methods:This was a mixed-methods study among caretakers of infants who received congenital heart surgery from 2019 to 2020 in the Chicagoland area. Quantitative variables measuring sociodemographic characteristics and prenatal care utilization, and qualitative data pertaining to patient-reported barriers to prenatal diagnosis were collected from electronic health records and semi-structured phone surveys. Thematic analysis was performed using a convergent parallel approach.

Results:In total, 160 caretakers completed the survey, 438 were eligible for survey, and 49 (31%) received prenatal care during the COVID-19 pandemic. When comparing respondents and non-respondents, there was a lower prevalence of maternal Hispanic ethnicity and a higher prevalence of non-English/Spanish-speaking households. Of all respondents, 34% reported an undetected CHD on ultrasound or echocardiogram, while 79% reported at least one barrier to prenatal diagnosis related to social determinants of health. Among those social barriers, the most common were difficulty with appointment scheduling (n = 12, 9.5%), far distance to care/lack of access to transportation (n = 12, 9.5%) and difficulty getting time off work to attend appointments (n = 6, 4.8%). The latter two barriers were correlated.

Conclusion:While technical improvements in the detection of CHDs remain an important area of research, it is equally critical to produce evidence for interventions that mitigate barriers to prenatal diagnosis due to social determinants of health.

Type

Article

PubMed ID

38108462