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Prenatal counseling for heart disease: Perception of understanding and communication gaps
Katherine J DeWeert1, Melissa K Cousino2, Sunkyung Yu2
1Department of Pediatrics, University of Michigan, Ann Arbor, MI, USA. kadeweer@med.umich.edu.
Insights
Parental understanding of fetal congenital heart disease (CHD) diagnosis aligns with physician perception for many aspects. However, significant knowledge gaps persist regarding mortality and long-term outcomes following prenatal counseling.
Area of Science:
- Pediatric Cardiology
- Fetal Medicine
- Medical Education
Background:
- Limited research exists on parental comprehension after prenatal counseling for congenital heart disease (CHD).
- Evaluating parental knowledge of fetal CHD diagnoses is crucial for informed decision-making.
- Assessing congruence between physician and parent perceptions of understanding is vital.
Purpose of the Study:
- To evaluate parental knowledge of their fetus's CHD diagnosis.
- To assess the congruence between physician and parent assessments of parental understanding.
- To identify specific areas of knowledge gaps in prenatal CHD counseling.
Main Methods:
- Paired surveys administered to pediatric cardiologists and parents of fetuses diagnosed with CHD.
- Assessment of parental knowledge regarding diagnosis, treatment, and complications.
- Gwet's agreement coefficients (GAC) utilized to measure congruence.
Main Results:
- Good congruence observed for diagnosis (GAC 0.89), neonatal surgery (GAC 0.81), and lifelong care (GAC 0.66).
- Cardiologists perceived high parental understanding of mortality and neurodevelopmental risks.
- Parental knowledge regarding mortality (GAC -0.04) and neurodevelopmental outcomes (GAC 0.05) was poor.
Conclusions:
- Parental knowledge generally aligns with cardiologist perceptions for many CHD counseling aspects.
- Communication gaps were identified concerning parental understanding of mortality and long-term outcomes.
- Improved communication strategies are needed to address knowledge deficits in prenatal CHD counseling.
Background:
Research on parental understanding following prenatal counseling for congenital heart disease (CHD) is limited. We aimed to evaluate parental knowledge of their fetus' CHD diagnosis and congruence between physician's and parent's assessments of parental understanding.
Methods:
Paired surveys of pediatric cardiologists and parents of fetuses requiring neonatal heart surgery assessed parental knowledge and perceived understanding of diagnosis, treatment and complications. Gwet's agreement coefficients (GAC) were used to examine congruence.
Results:
There was good congruence between 40 participating parents and cardiologists regarding knowledge of the diagnosis (GAC 0.89), need for neonatal surgery (GAC 0.81), need for further surgeries and lifelong care (GAC 0.66 and 0.65). While cardiologists perceived parents understood risk of mortality and neurodevelopmental outcomes, parental knowledge was poor (GAC -0.04 and 0.05, respectively).
Conclusion:
For many aspects of counseling, parental knowledge is congruent with cardiologist's perceptions; however, communication gaps exist for knowledge of mortality and other longer-term outcomes.
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