In response to an open-ended question pertaining to CHD diagnosis, nearly one-quarter reported a challenge related specifically to prenatal or postnatal counseling, reflecting patients’ value of effective counseling as part of CHD diagnosis. That challenges were reported from those with either prenatal or postnatal diagnosis signifies the need for improved counseling practices across many clinical subspecialities and phases of care. Finally, using the SPIKES framework [17], we demonstrate that patients value aspects of counseling that are not directly related to CHD anatomy or outcomes, such as more information about their counseling provider’s specialty (setting), and the counseling provider taking into account their expectations for information about the diagnosis or management decisions (perception and invitation). More specifically, we identified two areas for improvement that have not been previously described [6]: challenges in communicating the indications for studies, which may have led to the perception of repetitive and unnecessary imaging studies, and the lack of cardiologist input at the time of initial CHD diagnosis.

Significant research has been dedicated to increasing the accuracy of identifying congenital heart defects, including incorporation of outflow tract views on obstetric ultrasound to improve the detection of conotruncal defects [19, 20], and the use of artificial intelligence to detect CHD [21, 22]. By comparison, research pertaining to counseling expectant parents about CHDs is nascent [6]. Previous studies pertaining to counseling have quantitatively evaluated communication skills by measuring patients’ knowledge of the cardiac anatomy and prognosis, rather than other essential aspects of counseling [7, 9]. In this hypothesis-generating analysis, perception of repetitive studies might have been mitigated with more counseling pertaining to the indication for follow-up studies. Implementation research that tests these types of counseling interventions will better inform the development of formal curricula for CHD counseling, which does not currently exist for trainees, but has been proposed as an educational priority [5, 8].

The most common counseling challenges that we identified related to the effective communication of indications for imaging. Some respondents directly stated that they did not know the specialty of their counseling provider or the reason that an imaging study was performed. Others reported a perception of unnecessary repetitive imaging studies. Among those who reported repeated fetal echocardiograms to obtain the correct anatomic diagnosis, all had fetuses with either tetralogy of Fallot or tetralogy-type double outlet right ventricle, where the cardiologists’ reasoning for follow-up echocardiograms were likely to evaluate the degree of right-sided outflow obstruction, rather than to delineate anatomy. Among those who reported repeated imaging for monitoring, most had critical fetal CHD with potential for evolving outflow tract obstruction or restrictive atrial septum. While only some of the patients who reported repeated imaging for monitoring specifically stated the perception that the repeated imaging did not change management, clearly communicating the indication and importance of follow-up studies may have prevented these perceptions of repeated imaging and subsequently improved patient–provider relationships; inadequate communication of the indication could lead to frustration or even distrust, as suggested by these findings. Additionally, understanding testing indications might influence adherence to recommendations; in a previous analysis of this cohort, some respondents with postnatal or late CHD diagnosis reported that they forwent second-trimester obstetric ultrasound because it was normal for previous pregnancies, or they did not think it would add diagnostic value beyond routine blood tests obtained during pregnancy [13].

Conversely, a minority of respondents who reported repeated imaging had fetuses with isolated septal defects, which, in absence of other comorbidities, does not typically require multiple fetal echocardiograms to make decisions about perinatal management. More research is necessary to evaluate how repeated studies influence the pregnant individual’s perceptions about the CHD diagnosis, such as whether pregnant individuals perceive repeated studies as helpful, even if repeated studies were not necessary to make decisions about perinatal management. If there were some perceived benefit, an analysis of the increased prenatal expenditures due to repeated imaging against the value of the benefit for the pregnant individual (i.e., cost–benefit analysis) would also be highly informative.

The second-most common counseling challenge related to the lack of cardiologist presence at the time of CHD diagnosis, including the perception that insufficient information about the CHD was conveyed by the obstetrician, delivery team, or neonatologist. This finding is closely related to previous analyses that demonstrated that shorter length of time between ultrasound and counseling for CHD by a cardiologist [23] was associated with more patient-perceived success in counseling [24, 25]. Remote counseling from a cardiologist through telemedicine might mitigate both challenges. However, the feasibility of telemedicine for CHD counseling requires more understanding of the current supply/workforce of cardiologists, the demand for remote counseling, the cost–benefit of remote review of obstetric ultrasounds or echocardiograms performed at community hospitals [26], and the ethical and legal implications of remote counseling, such as misdiagnosis or the inability to fully address cultural norms or emotional cues in a remote setting [27]. Given these current limitations of telemedicine, improved training regarding patient-centered counseling from non-cardiologists may be one way to mitigate patient anxiety due to the lack of cardiologist presence.

Some challenges identified in our analysis were similar to those identified in previous studies, such as patients not feeling supported in their choices with regard to termination of pregnancy [28, 29]. This challenge further highlights the vital importance of strengthening provider training and comfort with communication about reproductive choice and patient autonomy, including for non-obstetric providers who co-manage CHD. This finding also highlights the strength of having multidisciplinary teams present when counseling pregnant individuals with a diagnosis of fetal CHD [30], a strength that was reported by several respondents in our study.

There were also findings from our analysis that differed from findings of previous studies, which may reflect study limitations. First, none of the respondents reported challenges related to language or health literacy in response to a broad question about barriers to diagnosis [31, 32]. These differences might reflect the impacts of resource investment for psychosocial support and translation services at our institutions that more pressing challenges overruled those related to language or health literacy, or selection bias within our respondent population. Second, approximately one-quarter of the respondents would have received prenatal care during the COVID-19 pandemic. While respondents previously described the lack of a partner as a barrier to diagnosis [13], specific counseling-related challenges during the COVID-19 pandemic were not identified in our analysis. Third, our analysis focused on challenges. A positive health approach focused on strengths and assets may warrant additional clinically useful findings. For example, three respondents remarked on the detail of the anatomic diagnosis and the accuracy of postnatal events that were explained previously. Another two respondents commented on the value of the multidisciplinary counseling for their fetuses, both of which had chromosomal abnormalities. However, due to the nature of our study design, further inquiry about these strengths was not conducted. Finally, we did not explore all potential counseling-related experiences, as our analysis includes responses to an open-ended question about barriers to CHD diagnosis. Future studies could utilize our findings and analytic approach using SPIKES, to design future work covering the full breadth of counseling experiences.