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Patient-reported barriers to prenatal diagnosis of congenital heart defects: A mixed-methods study
Joyce L Woo1,2, Shelvonne Burton1,3,4, Tara Iyengar5
1Division of Cardiology, Department of Pediatrics, Ann & Robert H. Lurie Children's Hospital of Chicago, Northwestern University Feinberg School of Medicine, Chicago, Illinois, USA.
Insights
Many caretakers faced barriers to prenatal diagnosis of congenital heart defects (CHDs). Social determinants of health, like transportation and time off work, significantly hindered early detection in expectant mothers.
Area of Science:
- Maternal Health
- Public Health
- Pediatric Cardiology
Background:
- Congenital heart defects (CHDs) are a leading cause of infant mortality.
- Prenatal diagnosis of CHDs can significantly improve outcomes.
- Barriers to accessing prenatal care and diagnosis are not fully understood.
Purpose of the Study:
- To identify patient-reported, modifiable barriers to the prenatal diagnosis of congenital heart defects (CHDs).
- To understand the role of social determinants of health in hindering CHD prenatal diagnosis.
Main Methods:
- Mixed-methods study involving caretakers of infants undergoing congenital heart surgery.
- Data collected via electronic health records and semi-structured phone surveys.
- Thematic analysis using a convergent parallel approach.
Main Results:
- 79% of caretakers reported barriers related to social determinants of health.
- Common barriers included appointment scheduling difficulties, transportation issues, and inability to take time off work.
- 34% of CHDs were undetected prenatally via ultrasound or echocardiogram.
Conclusions:
- Social determinants of health present significant barriers to prenatal CHD diagnosis.
- Interventions addressing these social barriers are crucial for improving prenatal detection rates.
- Future research should focus on mitigating these modifiable barriers.
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.
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