Missing the heart of the matter: Limitations of parental understanding during prenatal consultations for normal fetal echocardiograms

Missing the heart of the matter: Limitations of parental understanding during prenatal consultations for normal fetal echocardiograms | Research Square window.SnipcartSettings = { analytics: { enabled: false } }; (function() { var accessVector = localStorage.getItem('access_vector') || ''; window.dataLayer = window.dataLayer || []; if (accessVector) { window.dataLayer.push({ user: { profile: { profileInfo: { snid: accessVector } } } }); } })(); (function(w,d,s,l,i){w[l]=w[l]||[];w[l].push({'gtm.start':new Date().getTime(),event:'gtm.js'});var f=d.getElementsByTagName(s)[0],j=d.createElement(s),dl=l!='dataLayer'?'&l='+l:'';j.async=true;j.src='https://www.googletagmanager.com/gtm.js?id='+i+dl;f.parentNode.insertBefore(j,f);})(window,document,'script','dataLayer','GTM-K279D39R'); Browse Preprints In Review Journals COVID-19 Preprints AJE Video Bytes Research Tools Research Promotion AJE Professional Editing AJE Rubriq About Preprint Platform In Review Editorial Policies Our Team Advisory Board Help Center Sign In Submit a Preprint Cite Share Download PDF Research Article Missing the heart of the matter: Limitations of parental understanding during prenatal consultations for normal fetal echocardiograms Chantal Angueyra, Adriana Montes-Gil, Nicole Marella, Julie Glickstein, and 2 more This is a preprint; it has not been peer reviewed by a journal. https://doi.org/ 10.21203/rs.3.rs-3915422/v1 This work is licensed under a CC BY 4.0 License Status: Posted Version 1 posted You are reading this latest preprint version Abstract Background Congenital heart disease is the most common congenital malformation worldwide. Prenatal diagnosis provides the opportunity to counsel parents and help them prepare for their future with their child. This study aimed to assess parental knowledge following a prenatal consultation with a pediatric cardiologist for a normal fetal echocardiogram. Improved parental communication in prenatal consultations with pediatric cardiologists is critical to improving outcomes for these children and their families. Methods. This prospective questionnaire based descriptive study was conducted at a single regional perinatal center with a level four neonatal intensive care unit and a dedicated infant cardiac intensive care unit. After prenatal consults with a pediatric cardiologist, surveys were administered to consenting parents that received a normal fetal echocardiogram result and their pediatric cardiologists. Results From November 2020 to April 2021, 50 parents completed the survey, 34 of whom reported English as their primary language. Of the 16 parents reporting a different primary language, ten parents preferred the consultation to occur in English, and six preferred the consultation in Spanish. Multivariate regression analysis revealed that the presence of a language barrier was associated with decreased understanding of the limitations of a normal fetal echocardiogram (14% vs 84%, p < 0.001) and follow-up recommendations (29% vs 91%, p < 0.01). There was a trend toward decreased understanding with lower education levels, but this difference was not statistically significant. Despite limitations in comprehension, parents and cardiologists were satisfied with the consults and perceived parental understanding as good or extremely good. Conclusion Limited English proficiency is an important barrier to comprehension during prenatal consultations with pediatric cardiologists even when best practices of in-person medical interpreters are used. Objective evaluation of parental understanding is critical given that parents and cardiologists may not accurately perceive limitations in knowledge. Neonates fetal echocardiogram prenatal consults parental understanding language barriers Figures Figure 1 Figure 2 Figure 3 Figure 4 Figure 5 1. Background Congenital heart disease (CHD) is the most common congenital malformation and affects approximately 9.4/1,000 births worldwide [ 1 ]. A prenatal diagnosis of CHD has been associated with improved outcomes for infants, including a more stable preoperative course and a reduction in neurological sequelae [ 2 , 3 ]. Given the benefits of prenatal diagnosis of CHD, current obstetric ultrasound protocols incorporate multiple views of the heart to screen for CHD during anatomical scans for all pregnancies. A dedicated fetal echocardiogram is indicated when there is an abnormal obstetric screening or fetal and maternal factors associated with an increased risk of CHD. Fetal echocardiography performed by experienced cardiologists can detect up to 90% of severe CHD cases [ 4 ]. After a fetal echocardiogram has been completed, prenatal cardiology consults provide an opportunity to educate parents on echocardiogram results and help them prepare for their future with their infant. Studies evaluating parental understanding of symptoms, hereditary risks, outcomes, and management of CHD have shown important parental knowledge gaps [ 5 – 8 ]. Parental education level, the presence of a language barrier, and parental anxiety are negatively correlated with understanding [ 5 , 7 , 9 , 10 ]. In contrast, a prenatal diagnosis and lower complexity of CHD improve understanding [ 6 , 10 ]. Moreover, lower parental health literacy can be associated with worse health outcomes, decreased understanding of preventive care, and limited access to preventive services [ 11 – 13 ]. Given the gaps in parental knowledge of children with CHD, it is critical for health care teams to assess parental understanding following prenatal consultations and identify barriers to comprehension. Limited data exist on successful knowledge transfer from pediatric cardiologists to parents during prenatal consultations. Our study aimed to assess parental knowledge following a prenatal consultation with a pediatric cardiologist for a normal fetal echocardiogram. The secondary aims included assessing physician recognition of the success of knowledge transfer, parental perceptions of these consults, and parental anxiety before and after the visit. The findings from this study could help identify opportunities to improve communication in future prenatal consultations for parents with normal fetal echocardiograms and even for those receiving a diagnosis of a complex CHD. 2. Materials and Methods 2.1 Study setting and subject eligibility A prospective questionnaire-based descriptive study was conducted at a single regional perinatal center with a level four Neonatal Intensive Care Unit (NICU) and a dedicated infant cardiac intensive care unit. Subjects were enrolled from November 2019 to April 2020. This study was approved by the Institutional Review Board (IRB), and informed consent was obtained from each parent and cardiologist participating in the study. Parents were approached for consent to participate after their prenatal consult with a pediatric cardiologist. Surveys were administered to 50 parents who received a normal fetal echocardiogram and to pediatric cardiologists who performed the prenatal consultations. Surveys were then matched between parents and their cardiologists. The inclusion criteria for parents included a normal fetal echocardiogram, a preferred language of English or Spanish, and an age of 21 years or older. Families were informed about the study after their prenatal consult, and they were approached in person or by phone to complete the survey. During the study period, pregnant women were not allowed to have companions during their prenatal consultations due to Coronavirus-19 (COVID-19) visitation restrictions; therefore, the companions attended the consultations via video or phone calls. 2.2 Instruments 2.2.1 Parent Survey Content This original 25-item survey addressed three content areas: transfer of knowledge from cardiologists to parents, self-reported parental understanding and satisfaction, and parental anxiety (Supplement 1). The survey was developed specifically for this study through a literature review and was reviewed by an expert panel that included neonatologists and cardiologists [ 6 , 7 , 14 – 16 ]. Survey items were then pretested for readability and comprehensibility by parents whose children had CHD and had been discharged from the NICU. Knowledge transfer was evaluated using multiple choice questions, while self-reported parental understanding and satisfaction were assessed using a 4-point Likert scale and open-ended questions. Surveys were conducted by a bilingual investigator by phone in either Spanish or English, as preferred by the parent. In the first section, parents were asked about sociodemographic characteristics, including age, highest level of education, and marital status. Parents were also asked whether this was their first pregnancy, if they had other children, and whether they had taken care of a child with CHD in the past. Primary language (native language) and preferred language (the language preferred by the parent for interactions with health care providers) were differentiated. The second section assessed the knowledge transfer of the information that pediatric cardiologists considered necessary for parents to understand during counseling. This included the indication for the fetal echocardiogram, the limitations of a normal result, and follow-up recommendations. In the third section, parents were asked to report their impressions of the consult. Themes explored included how well parents believed they understood the information provided, whether the amount of information was appropriate and sufficient, what parts of the consult were helpful, what additional information would have been helpful, and their overall satisfaction with the prenatal consult. In the final section, parents were asked to complete the 6-item State-Trait Anxiety Questionnaire (STAI) to assess their anxiety before and after the consultation. The abbreviated STAI measures current levels of anxiety and has been well validated in parents and pregnant women in prior studies [ 17 – 19 ]. STAI scores range from 20 to 80, where a higher score reflects greater anxiety. 2.2.2. Pediatric Cardiologist Survey Content This survey was developed by the investigators and reviewed by an expert panel that included neonatologists and cardiologists (Supplement 2). The survey evaluated recommendations for follow-up after the prenatal consultation, their satisfaction with the consultation, and their perceptions of parental understanding and parental anxiety during the visit. Pediatric cardiologists were asked to complete the survey immediately after the consultation to limit recall bias. 2.3. Chart Review Medical records were reviewed to obtain information regarding the indication for the fetal echocardiogram, maternal obstetric history, results of the fetal echocardiogram, and documentation of information shared with parents during the consultation. 2.4. Ethical considerations and recruitment This study was approved by the Institutional Review Board of Columbia University. After the prenatal consultations, parents were told briefly about the study and asked whether they agreed to be approached by the researchers. If parents agreed, they were approached in person or by telephone to obtain verbal informed consent and received a digital or physical copy. Parental surveys were screened for high levels of anxiety, and parents were referred to social work as appropriate. When clinically significant knowledge gaps were encountered, the investigator provided a brief explanation directly after conducting the survey. At the beginning of the study, all cardiologists who participated in these prenatal consults provided written informed consent. 2.5. Statistical analysis The statistical tests were performed and stratified based on two main outcomes: understanding of the limitations of normal fetal echocardiograms and follow-up recommendations. To evaluate the associations with demographic characteristics, the chi-square test was used for categorical variables, and the Kruskal‒Wallis test was used for nonparametric continuous variables. The two-sided Wilcoxon signed-rank test was performed to compare the STAI scores before and after the consultation. To address the potential collinearity of several categorical variables that cover similar content, we used the R package “rms” to calculate the variance inflation factor (VIF) in our models. The presence of a language barrier identified by cardiologists was included in multivariate models, and primary and preferred languages were excluded from the analysis. Multivariate logistic regression models were used to evaluate the associations between variables and outcomes. A p value < 0.05 was considered to indicate statistical significance. Given that this was a pilot study to assess the baseline level of understanding of our population, a power analysis was not conducted. The sample size was determined based on prior studies evaluating parental understanding. Clinical data were collected using Microsoft© Excel® (16.0.5044.1000) [ 20 ]. Data aggregation and statistical analysis were performed using R software (Vienna, Austria) and RStudio© (RStudio, Inc.)[ 21 , 22 ]. 3. Results 3.1. Response Rates and Respondent Characteristics Of the families screened during the study period, 50 parents provided informed consent and completed the survey. Of these, 49 surveys were completed by mothers, and 1 survey was completed by a father. The demographic characteristics of the parents included in the study are listed in Table 1 . Most parents had completed college (36/50, 72%). While most parents reported English as their primary language (34/50, 68%), 16 parents reported primary language other than English. Of those reporting a language other than English as their primary language, 12 parents (12/16, 75%) reported Spanish, and four parents (4/16, 25%) reported Japanese, Tamil, Georgian or Russian as their primary language. Of the 16 parents whose primary language was not English, 10 (10/16, 63%) preferred the consult to occur in English (their non-primary language). The remaining six parents (6/16, 37%) preferred their consultation to occur in Spanish, their primary language. Forty-four consults (44/50, 88%) were completed in English, and six (6/50, 12%) were completed in Spanish. A bilingual nurse practitioner from the pediatric cardiology team helped conduct all the consultations in Spanish. None of the pediatric cardiologists performing these consultations were fluent in Spanish. Table 1 Parent demographic characteristics Relationship Mothers 49 (98%) Fathers 1 (2%) Age 21 y – 29 y 7 (14%) 30 y − 39 y 34 (68%) > 39 y 9 (18%) Education level High school or less 14 (28%) College or more 36 (72%) Self-Identified primary language English 34 (68%) Spanish 12 (24%) Other 4 (8%) Preferred language for consult English 44 (88%) Spanish 6 (12%) 3.2. Transfer of Knowledge 3.2.1 Indication for the Fetal Echocardiogram Fetal echocardiograms were performed for a variety of indications and are shown in Table 2 . Most parents understood the indication for their fetal echocardiogram (47/50, 94%). Table 2 Indications for fetal echocardiogram In-vitro fertilization 14 (28%) Presence of another congenital anomaly 12 (24%) More than one indication 9 (18%) Maternal diabetes 6 (12%) Incomplete visualization of the heart in fetal ultrasound 4 (8%) Suspected cardiac anomaly in fetal ultrasound 2 (4%) Family history of CHD 2 (4%) Multiple gestation 1 (2%) 3.2.2 Limitations of a Normal Fetal Echocardiogram Parental understanding of the limitations of fetal echocardiograms is shown in Fig. 1 . Twenty-six percent (13/50) of the parents did not understand that their infant could have minor heart defects despite a normal result (Fig. 1A). Decreased understanding was associated with primary languages other than English, Spanish as the preferred language, and the presence of a language barrier identified by cardiologists (Fig. 2C-2E) . There was a trend toward decreased understanding with an education level of high school or less, but this difference was not statistically significant (57% vs 81%, p = 0.15; Fig. 1B ). Among parents reporting Spanish as their preferred language, 17% (1/6) understood the limitations of fetal echocardiogram, compared to 82% (36/44) of parents whose preferred language was English (Fig. 1C – 17% vs 82%, p < 0.05). Fifty percent (8/16) of the parents whose primary language was other than English understood the limitations, compared to 85% (29/34) of the parents whose primary language was English (Fig. 1D: 56% vs 85%, p < 0.05). Similarly, 14% (1/7) of the parents in whom cardiologists identified a language barrier understood the limitations, compared 84% (36/43) of the parents in whom cardiologists did not identify one (Fig. 1E – 14% vs 84%, p < 0.001). Multiple logistic regression analysis showed that a language barrier identified by the cardiologist was independently associated with decreased parental understanding. Education level was not significantly associated with understanding even when other variables were controlled for. In this model, preferred or primary languages were excluded from the analysis given their collinearity with a language barrier. There were no differences in understanding of fetal echocardiogram limitations according to age, marital status, first pregnancy, having taken care of a child with CHD, or STAI score after multivariate analysis. 3.2.3 Recommendations for Follow-up Echocardiogram Parental understanding of the recommendations for follow-up echocardiogram is shown in Fig. 2 . Eighteen percent of the parents (9/50) did not understand the follow-up echocardiogram recommendations made by the pediatric cardiologist (Fig. 2A). An education level of high school or less, primary language other than English, Spanish as the preferred language, and a language barrier identified by the cardiologists were associated with decreased understanding of recommendations for follow-up (Fig. 2B-2C). Fifty-seven percent (8/14) of parents with an education level of high school or less understood these recommendations, compared to 92% (33/36) of parents who completed at least college (Fig. 2B − 57% vs 81%, p < 0.01). Thirty-three percent (2/6) of the parents reporting Spanish as their preferred language understood the recommendations compared to 89% (39/44) of the parents whose preferred language was English (Fig. 2C – 33% vs 80%, p < 0.01). Moreover, 63% (10/16) of the parents whose primary language was other than English understood the recommendations, compared to 91% (31/34) of those whose primary language was English (Fig. 2D – 63 % vs 91%, p < 0.05). Additionally, fewer parents in whom cardiologists identified a language barrier to comprehension understood recommendations for follow-up compared to those parents in whom a language barrier was not identified (Fig. 2E – 29% vs 91%, p < 0.01). Multiple logistic regression analysis revealed that the presence of a language barrier identified by a cardiologist was independently associated with decreased parental understanding of the follow-up recommendations. Education level did not have a significant associated with understanding even after controlling for other variables. In this model, preferred or primary languages were excluded from the analysis given their collinearity with a language barrier. There were no differences in understanding of follow-up recommendations according to age, marital status, first pregnancy, having taken care of a child with CHD, or STAI score after multivariate analysis. 3.3. Perceived parental understanding All parents felt that they understood the information provided during the consultation moderately or extremely well ( Fig. 3 ). Pediatric cardiologists considered that parental understanding was moderately or extremely good in all but one case. They identified barriers to understanding in eight parents (8/50, 16%); in one parent, the perceived barrier was lack of interest, and in seven, it was language (7/50, 14%). Cardiologists identified language as a barrier in all parents whose preferred language was Spanish, even though an in-person interpreter was always used, and in one parent whose primary language was Georgian and preferred language was English. 3.4 Satisfaction with Consults All parents and cardiologists were satisfied with the prenatal consultations ( Fig. 4 ) . All parents (50/50, 100%) reported that the amount of information provided was “just right” and that there was appropriate time for their questions to be answered. 3.5 Parental anxiety before and after prenatal consultation There was no association between anxiety scores and parental understanding, but scores decreased significantly after prenatal consultations ( Fig. 5 ). Among the 30 parents who completed the STAI questionnaire to assess anxiety both before and after the consultation with pediatric cardiology, the median STAI score significantly decreased from 40 (77th percentile for women) before the consultation to 23 (2nd percentile for women) after the consultation (40 vs 23, p < 0.01). 4. Discussion This study indicates that knowledge transfer from pediatric cardiologists to parents during prenatal consultations for a normal fetal echocardiogram is incomplete. During the development of our survey, cardiologists considered it critical for parents to understand the limitations of normal fetal echocardiograms and follow-up recommendations. However, a significant number of parents did not understand these two elements after their visit. The presence of a language barrier identified by cardiologists and a primary or preferred language other than English were associated with lower parental understanding. Prior studies on parental understanding of their child’s CHD during childhood showed that a lower education level was negatively correlated with comprehension [ 6 , 7 ]. In our study, decreased understanding was not significantly associated with lower education levels after we corrected for other variables. This could be due to our smaller sample size or because most parents had an education level of at least high school. The absence of a significant correlation between parental education level and comprehension in our study could also reflect the relatively brief and simple information provided during these consultations or the fact that the information is indeed explained at or below the 6th grade reading level, as recommended by the American Medical Association [ 23 ]. In the U.S., 60.4 million or 20.7% of the population speak a language other than English at home [ 24 ]. Furthermore, 25.1 million or 8.6% of the population in the U.S. has Limited English Proficiency (LEP), defined as self-report of speaking English less than very well [ 24 ]. LEP has been associated with an increased risk of adverse outcomes in children’s health, limited access to health care and insurance, and worse health care quality, independent of ethnicity and socioeconomic status [ 25 – 27 ]. For these reasons, the Culturally and Linguistically Appropriate Services (CLAS) standards have indicated that patients with LEP must be counseled and consented using their preferred language, and health care organizations must make language assistance services available with interpreters or bilingual staff [ 28 ]. However, even with appropriate interpreter use, patients with language-discordant providers and those with LEP receive less health education, identify more difficulties understanding medical information, and are less satisfied with their care [ 29 , 30 ]. The use of a clinical interpreter may mitigate discrepancies in health education but does not fully eliminate language barriers [ 29 , 30 ]. In contrast, language-concordant providers may improve comprehension, increase patient-initiated questions and improve satisfaction compared to language-discordant providers with the use of a clinical interpreter [ 31 ]. In our study, a language barrier identified by cardiologists could serve as a surrogate for LEP, given that the providers considered there was a difficulty communicating in English with the parents. All consults in our study were completed in the parent’s preferred language. For those whose preferred language was not English, a bilingual nurse practitioner from the pediatric cardiology team performed the consult in Spanish. Despite ensuring adequate provision of language assistance services and identification of a language barrier by cardiologists, LEP was associated with decreased parental understanding during these consultations. This association remained significant even after we controlled for other variables. This finding reflects the importance of developing additional ways to support parents with LEP to improve comprehension during consults. It has been suggested that deficient communication between health-care providers and patients/caregivers is one of the mechanisms responsible for worse health outcomes and lower access to healthcare resources in groups with LEP [ 27 ]. Therefore, strategies focused on decreasing disparities in access to medical information could in turn have positive effects on children’s health and overall access to health care in the family [ 5 , 7 ]. Some of these strategies should include efforts to perform consults in the family’s preferred language with a bilingual provider, providing written information summarizing the consult in their preferred language, asking for “readback” of the information provided, and considering repeated consults for families with LEP. Despite the limitations in comprehension identified in our study, both parents and cardiologists were satisfied with the consult and perceived parental understanding as overall good. If both parents and physicians misperceive the level of understanding, parents may miss the opportunity to receive adequate counseling that may be critical for their child’s health care. Given that current practice and related research focusses mostly on parental satisfaction or physician impressions of parental understanding, further research involving objective assessments of parental understanding after prenatal consultations is needed. In prior studies, parents have suggested that the provision of supplementary written information and illustrations, recommendations on reliable websites or other informational sources, and repetitive counseling sessions can improve counseling success [ 10 , 14 , 32 ]. However, further research is needed to determine alternatives that objectively improve knowledge transfer during prenatal consultations, focusing on populations with barriers to comprehension, such as those with LEP. Anxiety has been correlated with decreased knowledge transfer in prenatal consults for prematurity but was not found to be associated with parental understanding after a child’s admission to the pediatric intensive care unit or before cardiac intervention in children with CHD [ 9 , 33 , 34 ]. In our study, there was no association between comprehension and anxiety scores. However, in our study, anxiety scores were overall lower than those reported in prior studies. In our study, no parent scored above the 90th percentile on the STAI questionnaire. Despite this, parents experienced a higher level of anxiety before prenatal consultation (median 77th percentile), which significantly decreased after consultation. Although the questionnaire was administered retrospectively, parents reported adequate recall of how they felt before and after the consultation. These results are consistent with a study showing that mothers waiting for fetal echocardiography have similar anxiety levels to those obtaining a diagnosis of fetal CHD and that anxiety significantly decreases after obtaining a normal result [ 35 ]. This finding indicates that even lower stakes consultations, such as those describing normal results, can induce parental anxiety. 5. Limitations This was a single-center study focused on parents whose preferred language was either English or Spanish. Although the results may not necessarily be applicable to other languages, they reflect the importance of assessing English proficiency when comprehension of medical counseling is being evaluated. Our initial goal was to include mothers and their companions; however, due to COVID-19 restrictions, only one father was included. Further work examining whether paternal understanding follows similar patterns would be valuable. Finally, the consistency of the information or the quality of the translations cannot be assessed given that we relied on physician recall rather than audio recordings of the consults. However, all cardiologists documented the information discussed in their notes and completed the surveys immediately after the consultation. 6. Conclusions There are deficiencies in parental understanding of the limitations of normal fetal echocardiograms and recommendations for follow-up after prenatal consults with pediatric cardiology. Limited English proficiency appears to be an important barrier to comprehension, even after correcting for other sociodemographic characteristics, such as education. Despite the deficiencies in the transfer of knowledge, both cardiologists and parents were satisfied with the consultations and perceived parental understanding as good, suggesting that objective evaluation of understanding is important in future studies that focus on the success of counseling. Abbreviations CHD: Congenital heart disease. NICU: Neonatal intensive care unit. LEP: Limited language proficiency. COVID-19: Coronavirus 19 Declarations Ethics approval and consent to participate This study, with approval no. IRB-AAAT0634, was conducted in accordance with the guidelines set forth by the Columbia University Institutional Review Board. All participants provided verbal informed consent before participating in the study and were subsequently provided with a written copy of the consent form. Consent for publication Not applicable Availability of data and materials The data that support the findings of this study are available on request from the corresponding author. The data are not publicly available due to privacy or ethical restrictions. Competing interests We have no conflicts of interest to disclose. Funding This research received no specific grant from any funding agency in the public, commercial, or not-for-profit sectors. Authors' contributions The authors confirm contribution to the paper as follows: study conception and design: C. Angueyra, K. Brennan and J. Glickstein; data collection: C. Angueyra, N. Marella, A. Montes-Gil; analysis and interpretation of results: C. Angueyra, N. Goldshtrom; draft manuscript preparation: C. Angueyra, K Brennan. All the authors listed above have read the final manuscript and have provided approval to submit this paper Pregnancy and Childbirth. All the authors accept full responsibility pertaining to the manuscript’s delivery and contents. Acknowledgements Not applicable. References Liu Y, Chen S, Zü L, Black GC, Choy M-K, Li N, Keavney BD (2019) Global birth prevalence of congenital heart defects 1970-2017: updated systematic review and meta-analysis of 260 studies. 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Survey for parents to evaluate parental understanding after prenatal consults for a normal fetal echocardiogram. Supplement2.Surveyforcardiologiststoevaluateparentalunderstandingafterprenatalconsultsforanormalfetalechocardiogram.docx Supplement 2. Survey for cardiologists to evaluate parental understanding after prenatal consults for a normal fetal echocardiogram. Cite Share Download PDF Status: Posted Version 1 posted You are reading this latest preprint version Research Square lets you share your work early, gain feedback from the community, and start making changes to your manuscript prior to peer review in a journal. As a division of Research Square Company, we’re committed to making research communication faster, fairer, and more useful. We do this by developing innovative software and high quality services for the global research community. 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Also discoverable on Platform About Our Team In Review Editorial Policies Advisory Board Help Center Resources Author Services Accessibility API Access RSS feed Manage Cookie Preferences © Research Square 2026 | ISSN 2693-5015 (online) Privacy Policy Terms of Service Do Not Sell My Personal Information {"props":{"pageProps":{"initialData":{"identity":"rs-3915422","acceptedTermsAndConditions":true,"allowDirectSubmit":true,"archivedVersions":[],"articleType":"Research Article","associatedPublications":[],"authors":[{"id":272695445,"identity":"ae1f2bae-421b-4f7e-b19e-5fee0aaf04a4","order_by":0,"name":"Chantal Angueyra","email":"data:image/png;base64,iVBORw0KGgoAAAANSUhEUgAAAZAAAAAyAQMAAABI0h/eAAAABlBMVEX///8AAABVwtN+AAAACXBIWXMAAA7EAAAOxAGVKw4bAAAAr0lEQVRIiWNgGAWjYHACxgcJFQwM7A0MDBLEamE2+HCGgYHnAAla2ARntpGihb/98DNm3nmH7XkYmA/e5iFGi8SZNLPHvNsOJ/YwsCVbE6XFgCHB3BioJcGegcdMmjgt/M+/SfPOATmM/xuRWiRyzCRnNhxm7GHgYSNOi8SNN8UGH46lJ/YwsxlbziFGC39/+sYHCTXW9jzszQ9vvCFGCwIwk6Z8FIyCUTAKRgE+AABIIix9wZt8TQAAAABJRU5ErkJggg==","orcid":"","institution":"University of South Florida – Tampa General Hospital","correspondingAuthor":true,"prefix":"","firstName":"Chantal","middleName":"","lastName":"Angueyra","suffix":""},{"id":272695446,"identity":"5dd052ee-9d49-4400-a923-ef54ccb4a47f","order_by":1,"name":"Adriana Montes-Gil","email":"","orcid":"","institution":"Columbia University Medical Center, Morgan Stanley Children’s Hospital","correspondingAuthor":false,"prefix":"","firstName":"Adriana","middleName":"","lastName":"Montes-Gil","suffix":""},{"id":272695447,"identity":"df938666-ab39-4066-b42c-49c121fff1db","order_by":2,"name":"Nicole Marella","email":"","orcid":"","institution":"Robert Wood Johnson Medical School","correspondingAuthor":false,"prefix":"","firstName":"Nicole","middleName":"","lastName":"Marella","suffix":""},{"id":272695448,"identity":"87b789db-8dc6-4dbf-9c25-4e7025a8de6e","order_by":3,"name":"Julie Glickstein","email":"","orcid":"","institution":"Columbia University Medical Center, Morgan Stanley Children’s Hospital","correspondingAuthor":false,"prefix":"","firstName":"Julie","middleName":"","lastName":"Glickstein","suffix":""},{"id":272695449,"identity":"d61acd00-1d86-459d-870d-e77afbcb61b3","order_by":4,"name":"Nimrod Goldshtrom","email":"","orcid":"","institution":"Columbia University Medical Center, Morgan Stanley Children’s Hospital","correspondingAuthor":false,"prefix":"","firstName":"Nimrod","middleName":"","lastName":"Goldshtrom","suffix":""},{"id":272695450,"identity":"020c181e-c80f-4297-8f7c-d8ed16ca5926","order_by":5,"name":"Kathleen Brennan","email":"","orcid":"","institution":"Columbia University Medical Center, Morgan Stanley Children’s Hospital","correspondingAuthor":false,"prefix":"","firstName":"Kathleen","middleName":"","lastName":"Brennan","suffix":""}],"badges":[],"createdAt":"2024-02-01 00:00:02","currentVersionCode":1,"declarations":"","doi":"10.21203/rs.3.rs-3915422/v1","doiUrl":"https://doi.org/10.21203/rs.3.rs-3915422/v1","draftVersion":[],"editorialEvents":[],"editorialNote":"","failedWorkflow":false,"files":[{"id":51189128,"identity":"c713c839-1708-4343-9ddf-e3697cc4d7af","added_by":"auto","created_at":"2024-02-15 16:49:38","extension":"jpg","order_by":1,"title":"Figure 1","display":"","copyAsset":false,"role":"figure","size":61013,"visible":true,"origin":"","legend":"\u003cp\u003ePercent of parents who understand limitations of normal fetal echocardiograms.\u003c/p\u003e\n\u003cp\u003eParental understanding of the limitations of a normal fetal echocardiogram is negatively associated with the presence of a language barrier identified by cardiologists, as well as with primary and preferred languages other than English. The data are presented as percentages (numbers). Abbreviations: ns, nonsignificant; *, p\u0026lt;0.05; ***, p\u0026lt;0.001.\u003c/p\u003e","description":"","filename":"1.jpg","url":"https://assets-eu.researchsquare.com/files/rs-3915422/v1/f10bc0870dc352fba92b4e0f.jpg"},{"id":51189129,"identity":"20b036c7-6bba-466c-81c4-1900b26d9e06","added_by":"auto","created_at":"2024-02-15 16:49:38","extension":"jpg","order_by":2,"title":"Figure 2","display":"","copyAsset":false,"role":"figure","size":62221,"visible":true,"origin":"","legend":"\u003cp\u003ePercent of parents who understand follow-up recommendations after a normal fetal echocardiogram\u003c/p\u003e\n\u003cp\u003eParental understanding of follow-up recommendations is negatively associated with education level of high school or less, the presence of a language barrier identified by cardiologists, and primary and preferred languages other than English. The data are presented as percentages (numbers). Abbreviations: * p\u0026lt;0.05, ** p\u0026lt;0.01.\u003c/p\u003e","description":"","filename":"2.jpg","url":"https://assets-eu.researchsquare.com/files/rs-3915422/v1/b69e731a051b6a611fbbf61d.jpg"},{"id":51189133,"identity":"bed6419a-092e-4ab8-9acd-99f90038b322","added_by":"auto","created_at":"2024-02-15 16:49:38","extension":"jpg","order_by":3,"title":"Figure 3","display":"","copyAsset":false,"role":"figure","size":37637,"visible":true,"origin":"","legend":"\u003cp\u003ePerceived parental understanding after a prenatal consult for a normal fetal echocardiogram\u003c/p\u003e\n\u003cp\u003eParents and cardiologists perceive parental understanding as overall good. The dataare presented as percentages. n=50\u003c/p\u003e","description":"","filename":"3.jpg","url":"https://assets-eu.researchsquare.com/files/rs-3915422/v1/fa967f8ab3cdcd0d8f47f7ff.jpg"},{"id":51189130,"identity":"915e9a05-0da3-422d-a3c3-07a17ecec1f5","added_by":"auto","created_at":"2024-02-15 16:49:38","extension":"jpg","order_by":4,"title":"Figure 4","display":"","copyAsset":false,"role":"figure","size":41346,"visible":true,"origin":"","legend":"\u003cp\u003eSatisfaction with the prenatal consult for a normal fetal echocardiogram\u003c/p\u003e\n\u003cp\u003eParents and cardiologists were satisfied with the prenatal consultation for a normal fetal echocardiogram. The data are presented as percentages. n=50\u003c/p\u003e","description":"","filename":"4.jpg","url":"https://assets-eu.researchsquare.com/files/rs-3915422/v1/d57168c99c18b063fc39f5fa.jpg"},{"id":51189135,"identity":"586392cc-3822-4807-a06c-bb1102b50469","added_by":"auto","created_at":"2024-02-15 16:49:39","extension":"jpg","order_by":5,"title":"Figure 5","display":"","copyAsset":false,"role":"figure","size":36502,"visible":true,"origin":"","legend":"\u003cp\u003eParental anxiety scores in relation to prenatal consults for a normal fetal echocardiogram\u003c/p\u003e\n\u003cp\u003eParental anxiety scores significantly decreased after the pediatric cardiologists explained that the fetal echocardiogram was normal. n=30, ** p\u0026lt;0.01\u003c/p\u003e","description":"","filename":"5.jpg","url":"https://assets-eu.researchsquare.com/files/rs-3915422/v1/8ae6a0905465b67373e0fb65.jpg"},{"id":68477376,"identity":"9e101aaf-9dbd-484a-9822-181a13b17158","added_by":"auto","created_at":"2024-11-07 16:16:56","extension":"pdf","order_by":0,"title":"","display":"","copyAsset":false,"role":"manuscript-pdf","size":798497,"visible":true,"origin":"","legend":"","description":"","filename":"manuscript.pdf","url":"https://assets-eu.researchsquare.com/files/rs-3915422/v1/feae8690-7c0f-42e6-a725-79f9755cb7fe.pdf"},{"id":51189131,"identity":"f905bd38-1cd0-46e6-9abe-8419727ca746","added_by":"auto","created_at":"2024-02-15 16:49:38","extension":"docx","order_by":1,"title":"","display":"","copyAsset":false,"role":"supplement","size":28739,"visible":true,"origin":"","legend":"\u003cp\u003e\u003cstrong\u003e8. Supplementary materials\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eSupplement 1. Survey for parents to evaluate parental understanding after prenatal consults for a normal fetal echocardiogram.\u003c/p\u003e","description":"","filename":"Supplement1.Surveyforparentstoevaluateparentalunderstandingafterprenatalconsultsforanormalfetalechocardiogram.docx","url":"https://assets-eu.researchsquare.com/files/rs-3915422/v1/12c14d8e227c0ccc2a47f3f8.docx"},{"id":51190903,"identity":"4296edef-ca18-4015-bd9c-b1506d6008b2","added_by":"auto","created_at":"2024-02-15 16:57:38","extension":"docx","order_by":2,"title":"","display":"","copyAsset":false,"role":"supplement","size":21890,"visible":true,"origin":"","legend":"\u003cp\u003eSupplement 2. Survey for cardiologists to evaluate parental understanding after prenatal consults for a normal fetal echocardiogram.\u003c/p\u003e","description":"","filename":"Supplement2.Surveyforcardiologiststoevaluateparentalunderstandingafterprenatalconsultsforanormalfetalechocardiogram.docx","url":"https://assets-eu.researchsquare.com/files/rs-3915422/v1/afd0559ba7c63f49d2df506a.docx"}],"financialInterests":"No competing interests reported.","formattedTitle":"Missing the heart of the matter: Limitations of parental understanding during prenatal consultations for normal fetal echocardiograms","fulltext":[{"header":"1. Background","content":"\u003cp\u003eCongenital heart disease (CHD) is the most common congenital malformation and affects approximately 9.4/1,000 births worldwide [\u003cspan citationid=\"CR1\" class=\"CitationRef\"\u003e1\u003c/span\u003e]. A prenatal diagnosis of CHD has been associated with improved outcomes for infants, including a more stable preoperative course and a reduction in neurological sequelae [\u003cspan citationid=\"CR2\" class=\"CitationRef\"\u003e2\u003c/span\u003e, \u003cspan citationid=\"CR3\" class=\"CitationRef\"\u003e3\u003c/span\u003e]. Given the benefits of prenatal diagnosis of CHD, current obstetric ultrasound protocols incorporate multiple views of the heart to screen for CHD during anatomical scans for all pregnancies. A dedicated fetal echocardiogram is indicated when there is an abnormal obstetric screening or fetal and maternal factors associated with an increased risk of CHD. Fetal echocardiography performed by experienced cardiologists can detect up to 90% of severe CHD cases [\u003cspan citationid=\"CR4\" class=\"CitationRef\"\u003e4\u003c/span\u003e].\u003c/p\u003e \u003cp\u003eAfter a fetal echocardiogram has been completed, prenatal cardiology consults provide an opportunity to educate parents on echocardiogram results and help them prepare for their future with their infant. Studies evaluating parental understanding of symptoms, hereditary risks, outcomes, and management of CHD have shown important parental knowledge gaps [\u003cspan additionalcitationids=\"CR6 CR7\" citationid=\"CR5\" class=\"CitationRef\"\u003e5\u003c/span\u003e\u0026ndash;\u003cspan citationid=\"CR8\" class=\"CitationRef\"\u003e8\u003c/span\u003e]. Parental education level, the presence of a language barrier, and parental anxiety are negatively correlated with understanding [\u003cspan citationid=\"CR5\" class=\"CitationRef\"\u003e5\u003c/span\u003e, \u003cspan citationid=\"CR7\" class=\"CitationRef\"\u003e7\u003c/span\u003e, \u003cspan citationid=\"CR9\" class=\"CitationRef\"\u003e9\u003c/span\u003e, \u003cspan citationid=\"CR10\" class=\"CitationRef\"\u003e10\u003c/span\u003e]. In contrast, a prenatal diagnosis and lower complexity of CHD improve understanding [\u003cspan citationid=\"CR6\" class=\"CitationRef\"\u003e6\u003c/span\u003e, \u003cspan citationid=\"CR10\" class=\"CitationRef\"\u003e10\u003c/span\u003e]. Moreover, lower parental health literacy can be associated with worse health outcomes, decreased understanding of preventive care, and limited access to preventive services [\u003cspan additionalcitationids=\"CR12\" citationid=\"CR11\" class=\"CitationRef\"\u003e11\u003c/span\u003e\u0026ndash;\u003cspan citationid=\"CR13\" class=\"CitationRef\"\u003e13\u003c/span\u003e]. Given the gaps in parental knowledge of children with CHD, it is critical for health care teams to assess parental understanding following prenatal consultations and identify barriers to comprehension.\u003c/p\u003e \u003cp\u003eLimited data exist on successful knowledge transfer from pediatric cardiologists to parents during prenatal consultations. Our study aimed to assess parental knowledge following a prenatal consultation with a pediatric cardiologist for a normal fetal echocardiogram. The secondary aims included assessing physician recognition of the success of knowledge transfer, parental perceptions of these consults, and parental anxiety before and after the visit. The findings from this study could help identify opportunities to improve communication in future prenatal consultations for parents with normal fetal echocardiograms and even for those receiving a diagnosis of a complex CHD.\u003c/p\u003e"},{"header":"2. Materials and Methods","content":"\u003cdiv id=\"Sec3\" class=\"Section2\"\u003e \u003ch2\u003e2.1 Study setting and subject eligibility\u003c/h2\u003e \u003cp\u003eA prospective questionnaire-based descriptive study was conducted at a single regional perinatal center with a level four Neonatal Intensive Care Unit (NICU) and a dedicated infant cardiac intensive care unit. Subjects were enrolled from November 2019 to April 2020. This study was approved by the Institutional Review Board (IRB), and informed consent was obtained from each parent and cardiologist participating in the study.\u003c/p\u003e \u003cp\u003e Parents were approached for consent to participate after their prenatal consult with a pediatric cardiologist. Surveys were administered to 50 parents who received a normal fetal echocardiogram and to pediatric cardiologists who performed the prenatal consultations. Surveys were then matched between parents and their cardiologists.\u003c/p\u003e \u003cp\u003eThe inclusion criteria for parents included a normal fetal echocardiogram, a preferred language of English or Spanish, and an age of 21 years or older. Families were informed about the study after their prenatal consult, and they were approached in person or by phone to complete the survey. During the study period, pregnant women were not allowed to have companions during their prenatal consultations due to Coronavirus-19 (COVID-19) visitation restrictions; therefore, the companions attended the consultations via video or phone calls.\u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec4\" class=\"Section2\"\u003e \u003ch2\u003e2.2 Instruments\u003c/h2\u003e \u003cdiv id=\"Sec5\" class=\"Section3\"\u003e \u003ch2\u003e2.2.1 Parent Survey Content\u003c/h2\u003e \u003cp\u003eThis original 25-item survey addressed three content areas: transfer of knowledge from cardiologists to parents, self-reported parental understanding and satisfaction, and parental anxiety (Supplement 1). The survey was developed specifically for this study through a literature review and was reviewed by an expert panel that included neonatologists and cardiologists [\u003cspan citationid=\"CR6\" class=\"CitationRef\"\u003e6\u003c/span\u003e, \u003cspan citationid=\"CR7\" class=\"CitationRef\"\u003e7\u003c/span\u003e, \u003cspan additionalcitationids=\"CR15\" citationid=\"CR14\" class=\"CitationRef\"\u003e14\u003c/span\u003e\u0026ndash;\u003cspan citationid=\"CR16\" class=\"CitationRef\"\u003e16\u003c/span\u003e]. Survey items were then pretested for readability and comprehensibility by parents whose children had CHD and had been discharged from the NICU. Knowledge transfer was evaluated using multiple choice questions, while self-reported parental understanding and satisfaction were assessed using a 4-point Likert scale and open-ended questions. Surveys were conducted by a bilingual investigator by phone in either Spanish or English, as preferred by the parent.\u003c/p\u003e \u003cp\u003e In the first section, parents were asked about sociodemographic characteristics, including age, highest level of education, and marital status. Parents were also asked whether this was their first pregnancy, if they had other children, and whether they had taken care of a child with CHD in the past. Primary language (native language) and preferred language (the language preferred by the parent for interactions with health care providers) were differentiated.\u003c/p\u003e \u003cp\u003eThe second section assessed the knowledge transfer of the information that pediatric cardiologists considered necessary for parents to understand during counseling. This included the indication for the fetal echocardiogram, the limitations of a normal result, and follow-up recommendations.\u003c/p\u003e \u003cp\u003e In the third section, parents were asked to report their impressions of the consult. Themes explored included how well parents believed they understood the information provided, whether the amount of information was appropriate and sufficient, what parts of the consult were helpful, what additional information would have been helpful, and their overall satisfaction with the prenatal consult.\u003c/p\u003e \u003cp\u003e In the final section, parents were asked to complete the 6-item State-Trait Anxiety Questionnaire (STAI) to assess their anxiety before and after the consultation. The abbreviated STAI measures current levels of anxiety and has been well validated in parents and pregnant women in prior studies [\u003cspan additionalcitationids=\"CR18\" citationid=\"CR17\" class=\"CitationRef\"\u003e17\u003c/span\u003e\u0026ndash;\u003cspan citationid=\"CR19\" class=\"CitationRef\"\u003e19\u003c/span\u003e]. STAI scores range from 20 to 80, where a higher score reflects greater anxiety.\u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec6\" class=\"Section3\"\u003e \u003ch2\u003e2.2.2. Pediatric Cardiologist Survey Content\u003c/h2\u003e \u003cp\u003eThis survey was developed by the investigators and reviewed by an expert panel that included neonatologists and cardiologists (Supplement 2). The survey evaluated recommendations for follow-up after the prenatal consultation, their satisfaction with the consultation, and their perceptions of parental understanding and parental anxiety during the visit. Pediatric cardiologists were asked to complete the survey immediately after the consultation to limit recall bias.\u003c/p\u003e \u003c/div\u003e \u003c/div\u003e \u003cdiv id=\"Sec7\" class=\"Section2\"\u003e \u003ch2\u003e2.3. Chart Review\u003c/h2\u003e \u003cp\u003eMedical records were reviewed to obtain information regarding the indication for the fetal echocardiogram, maternal obstetric history, results of the fetal echocardiogram, and documentation of information shared with parents during the consultation.\u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec8\" class=\"Section2\"\u003e \u003ch2\u003e2.4. Ethical considerations and recruitment\u003c/h2\u003e \u003cp\u003eThis study was approved by the Institutional Review Board of Columbia University. After the prenatal consultations, parents were told briefly about the study and asked whether they agreed to be approached by the researchers. If parents agreed, they were approached in person or by telephone to obtain verbal informed consent and received a digital or physical copy. Parental surveys were screened for high levels of anxiety, and parents were referred to social work as appropriate. When clinically significant knowledge gaps were encountered, the investigator provided a brief explanation directly after conducting the survey. At the beginning of the study, all cardiologists who participated in these prenatal consults provided written informed consent.\u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec9\" class=\"Section2\"\u003e \u003ch2\u003e2.5. Statistical analysis\u003c/h2\u003e \u003cp\u003eThe statistical tests were performed and stratified based on two main outcomes: understanding of the limitations of normal fetal echocardiograms and follow-up recommendations. To evaluate the associations with demographic characteristics, the chi-square test was used for categorical variables, and the Kruskal‒Wallis test was used for nonparametric continuous variables. The two-sided Wilcoxon signed-rank test was performed to compare the STAI scores before and after the consultation. To address the potential collinearity of several categorical variables that cover similar content, we used the R package \u0026ldquo;rms\u0026rdquo; to calculate the variance inflation factor (VIF) in our models. The presence of a language barrier identified by cardiologists was included in multivariate models, and primary and preferred languages were excluded from the analysis. Multivariate logistic regression models were used to evaluate the associations between variables and outcomes. A p value\u0026thinsp;\u0026lt;\u0026thinsp;0.05 was considered to indicate statistical significance. Given that this was a pilot study to assess the baseline level of understanding of our population, a power analysis was not conducted. The sample size was determined based on prior studies evaluating parental understanding. Clinical data were collected using Microsoft\u0026copy; Excel\u0026reg; (16.0.5044.1000) [\u003cspan citationid=\"CR20\" class=\"CitationRef\"\u003e20\u003c/span\u003e]. Data aggregation and statistical analysis were performed using R software (Vienna, Austria) and RStudio\u0026copy; (RStudio, Inc.)[\u003cspan citationid=\"CR21\" class=\"CitationRef\"\u003e21\u003c/span\u003e, \u003cspan citationid=\"CR22\" class=\"CitationRef\"\u003e22\u003c/span\u003e].\u003c/p\u003e \u003c/div\u003e"},{"header":"3. Results","content":"\u003cdiv id=\"Sec11\" class=\"Section2\"\u003e\n \u003ch2\u003e3.1. Response Rates and Respondent Characteristics\u003c/h2\u003e\n \u003cp\u003eOf the families screened during the study period, 50 parents provided informed consent and completed the survey. Of these, 49 surveys were completed by mothers, and 1 survey was completed by a father. The demographic characteristics of the parents included in the study are listed in Table\u0026nbsp;\u003cspan class=\"InternalRef\"\u003e1\u003c/span\u003e. Most parents had completed college (36/50, 72%). While most parents reported English as their primary language (34/50, 68%), 16 parents reported primary language other than English. Of those reporting a language other than English as their primary language, 12 parents (12/16, 75%) reported Spanish, and four parents (4/16, 25%) reported Japanese, Tamil, Georgian or Russian as their primary language. Of the 16 parents whose primary language was not English, 10 (10/16, 63%) preferred the consult to occur in English (their non-primary language). The remaining six parents (6/16, 37%) preferred their consultation to occur in Spanish, their primary language. Forty-four consults (44/50, 88%) were completed in English, and six (6/50, 12%) were completed in Spanish. A bilingual nurse practitioner from the pediatric cardiology team helped conduct all the consultations in Spanish. None of the pediatric cardiologists performing these consultations were fluent in Spanish.\u003c/p\u003e\n \u003cdiv class=\"gridtable\"\u003e\u0026nbsp;\u003ctable id=\"Tab1\" border=\"1\"\u003e\n \u003ccaption language=\"En\"\u003e\n \u003cdiv class=\"CaptionNumber\"\u003eTable 1\u003c/div\u003e\n \u003cdiv class=\"CaptionContent\"\u003e\n \u003cp\u003eParent demographic characteristics\u003c/p\u003e\n \u003c/div\u003e\n \u003c/caption\u003e\n \u003ccolgroup cols=\"2\"\u003e\u003c/colgroup\u003e\n \u003cthead\u003e\n \u003ctr\u003e\n \u003cth align=\"left\" colspan=\"2\"\u003e\n \u003cp\u003eRelationship\u003c/p\u003e\n \u003c/th\u003e\n \u003c/tr\u003e\n \u003c/thead\u003e\n \u003ctbody\u003e\n \u003ctr\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003eMothers\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e49 (98%)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003eFathers\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e1 (2%)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd align=\"left\" colspan=\"2\"\u003e\n \u003cp\u003e\u003cstrong\u003eAge\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e21 y \u0026ndash; 29 y\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e7 (14%)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e30 y \u0026minus;\u0026thinsp;39 y\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e34 (68%)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e\u0026gt;\u0026thinsp;39 y\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e9 (18%)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd align=\"left\" colspan=\"2\"\u003e\n \u003cp\u003e\u003cstrong\u003eEducation level\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003eHigh school or less\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e14 (28%)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003eCollege or more\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e36 (72%)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd align=\"left\" colspan=\"2\"\u003e\n \u003cp\u003e\u003cstrong\u003eSelf-Identified primary language\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003eEnglish\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e34 (68%)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003eSpanish\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e12 (24%)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003eOther\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e4 (8%)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd align=\"left\" colspan=\"2\"\u003e\n \u003cp\u003e\u003cstrong\u003ePreferred language for consult\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003eEnglish\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e44 (88%)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003eSpanish\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e6 (12%)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003c/tbody\u003e\n \u003c/table\u003e\n \u003c/div\u003e\n \u003cp\u003e\u003cbr\u003e\u003c/p\u003e\n\u003c/div\u003e\n\u003cdiv id=\"Sec12\" class=\"Section2\"\u003e\n \u003ch2\u003e3.2. Transfer of Knowledge\u003c/h2\u003e\n \u003cdiv id=\"Sec13\" class=\"Section3\"\u003e\n \u003ch2\u003e3.2.1 Indication for the Fetal Echocardiogram\u003c/h2\u003e\n \u003cp\u003eFetal echocardiograms were performed for a variety of indications and are shown in Table\u0026nbsp;\u003cspan class=\"InternalRef\"\u003e2\u003c/span\u003e. Most parents understood the indication for their fetal echocardiogram (47/50, 94%).\u003c/p\u003e\n \u003cdiv class=\"gridtable\"\u003e\u0026nbsp;\u003ctable id=\"Tab2\" border=\"1\"\u003e\n \u003ccaption language=\"En\"\u003e\n \u003cdiv class=\"CaptionNumber\"\u003eTable 2\u003c/div\u003e\n \u003cdiv class=\"CaptionContent\"\u003e\n \u003cp\u003eIndications for fetal echocardiogram\u003c/p\u003e\n \u003c/div\u003e\n \u003c/caption\u003e\n \u003ccolgroup cols=\"2\"\u003e\u003c/colgroup\u003e\n \u003cthead\u003e\n \u003ctr\u003e\n \u003cth align=\"left\"\u003e\n \u003cp\u003eIn-vitro fertilization\u003c/p\u003e\n \u003c/th\u003e\n \u003cth align=\"left\"\u003e\n \u003cp\u003e14 (28%)\u003c/p\u003e\n \u003c/th\u003e\n \u003c/tr\u003e\n \u003c/thead\u003e\n \u003ctbody\u003e\n \u003ctr\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003ePresence of another congenital anomaly\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e12 (24%)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003eMore than one indication\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e9 (18%)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003eMaternal diabetes\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e6 (12%)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003eIncomplete visualization of the heart in fetal ultrasound\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e4 (8%)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003eSuspected cardiac anomaly in fetal ultrasound\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e2 (4%)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003eFamily history of CHD\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e2 (4%)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003eMultiple gestation\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e1 (2%)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003c/tbody\u003e\n \u003c/table\u003e\n \u003c/div\u003e\n \u003cp\u003e\u003cbr\u003e\u003c/p\u003e\n \u003c/div\u003e\n \u003cdiv id=\"Sec14\" class=\"Section3\"\u003e\n \u003ch2\u003e3.2.2 Limitations of a Normal Fetal Echocardiogram\u003c/h2\u003e\n \u003cp\u003eParental understanding of the limitations of fetal echocardiograms is shown in \u003cstrong\u003eFig.\u0026nbsp;1\u003c/strong\u003e. Twenty-six percent (13/50) of the parents did not understand that their infant could have minor heart defects despite a normal result \u003cstrong\u003e(Fig.\u0026nbsp;1A).\u003c/strong\u003e Decreased understanding was associated with primary languages other than English, Spanish as the preferred language, and the presence of a language barrier identified by cardiologists \u003cstrong\u003e(Fig.\u0026nbsp;2C-2E)\u003c/strong\u003e. There was a trend toward decreased understanding with an education level of high school or less, but this difference was not statistically significant (57% vs 81%, p\u0026thinsp;=\u0026thinsp;0.15; \u003cstrong\u003eFig.\u0026nbsp;1B\u003c/strong\u003e). Among parents reporting Spanish as their preferred language, 17% (1/6) understood the limitations of fetal echocardiogram, compared to 82% (36/44) of parents whose preferred language was English (Fig.\u0026nbsp;1C \u0026ndash; 17% vs 82%, p\u0026thinsp;\u0026lt;\u0026thinsp;0.05). Fifty percent (8/16) of the parents whose primary language was other than English understood the limitations, compared to 85% (29/34) of the parents whose primary language was English (Fig.\u0026nbsp;1D: 56% vs 85%, p\u0026thinsp;\u0026lt;\u0026thinsp;0.05). Similarly, 14% (1/7) of the parents in whom cardiologists identified a language barrier understood the limitations, compared 84% (36/43) of the parents in whom cardiologists did not identify one (Fig.\u0026nbsp;1E \u0026ndash; 14% vs 84%, p\u0026thinsp;\u0026lt;\u0026thinsp;0.001).\u003c/p\u003e\n \u003cp\u003eMultiple logistic regression analysis showed that a language barrier identified by the cardiologist was independently associated with decreased parental understanding. Education level was not significantly associated with understanding even when other variables were controlled for. In this model, preferred or primary languages were excluded from the analysis given their collinearity with a language barrier. There were no differences in understanding of fetal echocardiogram limitations according to age, marital status, first pregnancy, having taken care of a child with CHD, or STAI score after multivariate analysis.\u003c/p\u003e\n \u003c/div\u003e\n \u003cdiv id=\"Sec15\" class=\"Section3\"\u003e\n \u003ch2\u003e3.2.3 Recommendations for Follow-up Echocardiogram\u003c/h2\u003e\n \u003cp\u003eParental understanding of the recommendations for follow-up echocardiogram is shown in \u003cstrong\u003eFig.\u0026nbsp;2\u003c/strong\u003e. Eighteen percent of the parents (9/50) did not understand the follow-up echocardiogram recommendations made by the pediatric cardiologist (Fig. 2A). An education level of high school or less, primary language other than English, Spanish as the preferred language, and a language barrier identified by the cardiologists were associated with decreased understanding of recommendations for follow-up \u003cstrong\u003e(Fig.\u0026nbsp;2B-2C).\u003c/strong\u003e Fifty-seven percent (8/14) of parents with an education level of high school or less understood these recommendations, compared to 92% (33/36) of parents who completed at least college (Fig. 2B \u0026minus;\u0026thinsp;57% vs 81%, p\u0026thinsp;\u0026lt;\u0026thinsp;0.01). Thirty-three percent (2/6) of the parents reporting Spanish as their preferred language understood the recommendations compared to 89% (39/44) of the parents whose preferred language was English (Fig. 2C \u0026ndash; 33% vs 80%, p\u0026thinsp;\u0026lt;\u0026thinsp;0.01). Moreover, 63% (10/16) of the parents whose primary language was other than English understood the recommendations, compared to 91% (31/34) of those whose primary language was English \u003cstrong\u003e(Fig.\u0026nbsp;2D \u0026ndash; 63\u003c/strong\u003e% vs 91%, p\u0026thinsp;\u0026lt;\u0026thinsp;0.05). Additionally, fewer parents in whom cardiologists identified a language barrier to comprehension understood recommendations for follow-up compared to those parents in whom a language barrier was not identified (Fig.\u0026nbsp;2E \u0026ndash; 29% vs 91%, p\u0026thinsp;\u0026lt;\u0026thinsp;0.01).\u003c/p\u003e\n \u003cp\u003eMultiple logistic regression analysis revealed that the presence of a language barrier identified by a cardiologist was independently associated with decreased parental understanding of the follow-up recommendations. Education level did not have a significant associated with understanding even after controlling for other variables. In this model, preferred or primary languages were excluded from the analysis given their collinearity with a language barrier. There were no differences in understanding of follow-up recommendations according to age, marital status, first pregnancy, having taken care of a child with CHD, or STAI score after multivariate analysis.\u003c/p\u003e\n \u003c/div\u003e\n\u003c/div\u003e\n\u003cdiv id=\"Sec16\" class=\"Section2\"\u003e\n \u003ch2\u003e3.3. Perceived parental understanding\u003c/h2\u003e\n \u003cp\u003eAll parents felt that they understood the information provided during the consultation moderately or extremely well \u003cstrong\u003e(\u003c/strong\u003eFig. \u003cspan class=\"InternalRef\"\u003e3\u003c/span\u003e\u003cstrong\u003e).\u003c/strong\u003e Pediatric cardiologists considered that parental understanding was moderately or extremely good in all but one case. They identified barriers to understanding in eight parents (8/50, 16%); in one parent, the perceived barrier was lack of interest, and in seven, it was language (7/50, 14%). Cardiologists identified language as a barrier in all parents whose preferred language was Spanish, even though an in-person interpreter was always used, and in one parent whose primary language was Georgian and preferred language was English.\u003c/p\u003e\n\u003c/div\u003e\n\u003cdiv id=\"Sec17\" class=\"Section2\"\u003e\n \u003ch2\u003e3.4 Satisfaction with Consults\u003c/h2\u003e\n \u003cp\u003eAll parents and cardiologists were satisfied with the prenatal consultations \u003cstrong\u003e(\u003c/strong\u003eFig. \u003cspan class=\"InternalRef\"\u003e4\u003c/span\u003e\u003cstrong\u003e)\u003c/strong\u003e. All parents (50/50, 100%) reported that the amount of information provided was \u0026ldquo;just right\u0026rdquo; and that there was appropriate time for their questions to be answered.\u003c/p\u003e\n\u003c/div\u003e\n\u003cdiv id=\"Sec18\" class=\"Section2\"\u003e\n \u003ch2\u003e3.5 Parental anxiety before and after prenatal consultation\u003c/h2\u003e\n \u003cp\u003eThere was no association between anxiety scores and parental understanding, but scores decreased significantly after prenatal consultations \u003cstrong\u003e(\u003c/strong\u003eFig. \u003cspan class=\"InternalRef\"\u003e5\u003c/span\u003e\u003cstrong\u003e).\u003c/strong\u003e Among the 30 parents who completed the STAI questionnaire to assess anxiety both before and after the consultation with pediatric cardiology, the median STAI score significantly decreased from 40 (77th percentile for women) before the consultation to 23 (2nd percentile for women) after the consultation (40 vs 23, p\u0026thinsp;\u0026lt;\u0026thinsp;0.01).\u003c/p\u003e\n\u003c/div\u003e"},{"header":"4. Discussion","content":"\u003cp\u003eThis study indicates that knowledge transfer from pediatric cardiologists to parents during prenatal consultations for a normal fetal echocardiogram is incomplete. During the development of our survey, cardiologists considered it critical for parents to understand the limitations of normal fetal echocardiograms and follow-up recommendations. However, a significant number of parents did not understand these two elements after their visit. The presence of a language barrier identified by cardiologists and a primary or preferred language other than English were associated with lower parental understanding.\u003c/p\u003e \u003cp\u003ePrior studies on parental understanding of their child\u0026rsquo;s CHD during childhood showed that a lower education level was negatively correlated with comprehension [\u003cspan citationid=\"CR6\" class=\"CitationRef\"\u003e6\u003c/span\u003e, \u003cspan citationid=\"CR7\" class=\"CitationRef\"\u003e7\u003c/span\u003e]. In our study, decreased understanding was not significantly associated with lower education levels after we corrected for other variables. This could be due to our smaller sample size or because most parents had an education level of at least high school. The absence of a significant correlation between parental education level and comprehension in our study could also reflect the relatively brief and simple information provided during these consultations or the fact that the information is indeed explained at or below the 6th grade reading level, as recommended by the American Medical Association [\u003cspan citationid=\"CR23\" class=\"CitationRef\"\u003e23\u003c/span\u003e].\u003c/p\u003e \u003cp\u003eIn the U.S., 60.4\u0026nbsp;million or 20.7% of the population speak a language other than English at home [\u003cspan citationid=\"CR24\" class=\"CitationRef\"\u003e24\u003c/span\u003e]. Furthermore, 25.1\u0026nbsp;million or 8.6% of the population in the U.S. has Limited English Proficiency (LEP), defined as self-report of speaking English less than very well [\u003cspan citationid=\"CR24\" class=\"CitationRef\"\u003e24\u003c/span\u003e]. LEP has been associated with an increased risk of adverse outcomes in children\u0026rsquo;s health, limited access to health care and insurance, and worse health care quality, independent of ethnicity and socioeconomic status [\u003cspan additionalcitationids=\"CR26\" citationid=\"CR25\" class=\"CitationRef\"\u003e25\u003c/span\u003e\u0026ndash;\u003cspan citationid=\"CR27\" class=\"CitationRef\"\u003e27\u003c/span\u003e]. For these reasons, the Culturally and Linguistically Appropriate Services (CLAS) standards have indicated that patients with LEP must be counseled and consented using their preferred language, and health care organizations must make language assistance services available with interpreters or bilingual staff [\u003cspan citationid=\"CR28\" class=\"CitationRef\"\u003e28\u003c/span\u003e]. However, even with appropriate interpreter use, patients with language-discordant providers and those with LEP receive less health education, identify more difficulties understanding medical information, and are less satisfied with their care [\u003cspan citationid=\"CR29\" class=\"CitationRef\"\u003e29\u003c/span\u003e, \u003cspan citationid=\"CR30\" class=\"CitationRef\"\u003e30\u003c/span\u003e]. The use of a clinical interpreter may mitigate discrepancies in health education but does not fully eliminate language barriers [\u003cspan citationid=\"CR29\" class=\"CitationRef\"\u003e29\u003c/span\u003e, \u003cspan citationid=\"CR30\" class=\"CitationRef\"\u003e30\u003c/span\u003e]. In contrast, language-concordant providers may improve comprehension, increase patient-initiated questions and improve satisfaction compared to language-discordant providers with the use of a clinical interpreter [\u003cspan citationid=\"CR31\" class=\"CitationRef\"\u003e31\u003c/span\u003e].\u003c/p\u003e \u003cp\u003e In our study, a language barrier identified by cardiologists could serve as a surrogate for LEP, given that the providers considered there was a difficulty communicating in English with the parents. All consults in our study were completed in the parent\u0026rsquo;s preferred language. For those whose preferred language was not English, a bilingual nurse practitioner from the pediatric cardiology team performed the consult in Spanish. Despite ensuring adequate provision of language assistance services and identification of a language barrier by cardiologists, LEP was associated with decreased parental understanding during these consultations. This association remained significant even after we controlled for other variables. This finding reflects the importance of developing additional ways to support parents with LEP to improve comprehension during consults.\u003c/p\u003e \u003cp\u003eIt has been suggested that deficient communication between health-care providers and patients/caregivers is one of the mechanisms responsible for worse health outcomes and lower access to healthcare resources in groups with LEP [\u003cspan citationid=\"CR27\" class=\"CitationRef\"\u003e27\u003c/span\u003e]. Therefore, strategies focused on decreasing disparities in access to medical information could in turn have positive effects on children\u0026rsquo;s health and overall access to health care in the family [\u003cspan citationid=\"CR5\" class=\"CitationRef\"\u003e5\u003c/span\u003e, \u003cspan citationid=\"CR7\" class=\"CitationRef\"\u003e7\u003c/span\u003e]. Some of these strategies should include efforts to perform consults in the family\u0026rsquo;s preferred language with a bilingual provider, providing written information summarizing the consult in their preferred language, asking for \u0026ldquo;readback\u0026rdquo; of the information provided, and considering repeated consults for families with LEP.\u003c/p\u003e \u003cp\u003e Despite the limitations in comprehension identified in our study, both parents and cardiologists were satisfied with the consult and perceived parental understanding as overall good. If both parents and physicians misperceive the level of understanding, parents may miss the opportunity to receive adequate counseling that may be critical for their child\u0026rsquo;s health care. Given that current practice and related research focusses mostly on parental satisfaction or physician impressions of parental understanding, further research involving objective assessments of parental understanding after prenatal consultations is needed.\u003c/p\u003e \u003cp\u003eIn prior studies, parents have suggested that the provision of supplementary written information and illustrations, recommendations on reliable websites or other informational sources, and repetitive counseling sessions can improve counseling success [\u003cspan citationid=\"CR10\" class=\"CitationRef\"\u003e10\u003c/span\u003e, \u003cspan citationid=\"CR14\" class=\"CitationRef\"\u003e14\u003c/span\u003e, \u003cspan citationid=\"CR32\" class=\"CitationRef\"\u003e32\u003c/span\u003e]. However, further research is needed to determine alternatives that objectively improve knowledge transfer during prenatal consultations, focusing on populations with barriers to comprehension, such as those with LEP.\u003c/p\u003e \u003cp\u003eAnxiety has been correlated with decreased knowledge transfer in prenatal consults for prematurity but was not found to be associated with parental understanding after a child\u0026rsquo;s admission to the pediatric intensive care unit or before cardiac intervention in children with CHD [\u003cspan citationid=\"CR9\" class=\"CitationRef\"\u003e9\u003c/span\u003e, \u003cspan citationid=\"CR33\" class=\"CitationRef\"\u003e33\u003c/span\u003e, \u003cspan citationid=\"CR34\" class=\"CitationRef\"\u003e34\u003c/span\u003e]. In our study, there was no association between comprehension and anxiety scores. However, in our study, anxiety scores were overall lower than those reported in prior studies. In our study, no parent scored above the 90th percentile on the STAI questionnaire. Despite this, parents experienced a higher level of anxiety before prenatal consultation (median 77th percentile), which significantly decreased after consultation. Although the questionnaire was administered retrospectively, parents reported adequate recall of how they felt before and after the consultation. These results are consistent with a study showing that mothers waiting for fetal echocardiography have similar anxiety levels to those obtaining a diagnosis of fetal CHD and that anxiety significantly decreases after obtaining a normal result [\u003cspan citationid=\"CR35\" class=\"CitationRef\"\u003e35\u003c/span\u003e]. This finding indicates that even lower stakes consultations, such as those describing normal results, can induce parental anxiety.\u003c/p\u003e"},{"header":"5. Limitations","content":"\u003cp\u003eThis was a single-center study focused on parents whose preferred language was either English or Spanish. Although the results may not necessarily be applicable to other languages, they reflect the importance of assessing English proficiency when comprehension of medical counseling is being evaluated. Our initial goal was to include mothers and their companions; however, due to COVID-19 restrictions, only one father was included. Further work examining whether paternal understanding follows similar patterns would be valuable. Finally, the consistency of the information or the quality of the translations cannot be assessed given that we relied on physician recall rather than audio recordings of the consults. However, all cardiologists documented the information discussed in their notes and completed the surveys immediately after the consultation.\u003c/p\u003e"},{"header":"6. Conclusions","content":"\u003cp\u003eThere are deficiencies in parental understanding of the limitations of normal fetal echocardiograms and recommendations for follow-up after prenatal consults with pediatric cardiology. Limited English proficiency appears to be an important barrier to comprehension, even after correcting for other sociodemographic characteristics, such as education. Despite the deficiencies in the transfer of knowledge, both cardiologists and parents were satisfied with the consultations and perceived parental understanding as good, suggesting that objective evaluation of understanding is important in future studies that focus on the success of counseling.\u003c/p\u003e"},{"header":"Abbreviations","content":"\u003cp\u003eCHD: Congenital heart disease. NICU: Neonatal intensive care unit. LEP: Limited language proficiency. COVID-19: Coronavirus 19\u003c/p\u003e"},{"header":"Declarations","content":"\u003cp\u003eEthics approval and consent to participate\u003c/p\u003e\n\u003cp\u003eThis study, with approval no. IRB-AAAT0634, was conducted in accordance with the guidelines set forth by the Columbia University Institutional Review Board. All participants provided verbal informed consent before participating in the study and were subsequently provided with a written copy of the consent form.\u003c/p\u003e\n\u003cp\u003eConsent for publication\u003c/p\u003e\n\u003cp\u003eNot applicable\u003c/p\u003e\n\u003cp\u003eAvailability of data and materials\u003c/p\u003e\n\u003cp\u003eThe data that support the findings of this study are available on request from the corresponding author. The data are not publicly available due to privacy or ethical restrictions.\u003c/p\u003e\n\u003cp\u003eCompeting interests\u003c/p\u003e\n\u003cp\u003eWe have no conflicts of interest to disclose.\u003c/p\u003e\n\u003cp\u003eFunding\u003c/p\u003e\n\u003cp\u003eThis research received no specific grant from any funding agency in the public, commercial, or not-for-profit sectors.\u003c/p\u003e\n\u003cp\u003eAuthors\u0026apos; contributions\u003c/p\u003e\n\u003cp\u003eThe authors confirm contribution to the paper as follows: study conception and design: C. Angueyra, K. Brennan and J. Glickstein; data collection: C. Angueyra, N. Marella, A. Montes-Gil; analysis and interpretation of results: C. Angueyra, N. Goldshtrom; draft manuscript preparation: C. Angueyra, K Brennan. All the authors listed above have read the final manuscript and have provided approval to submit this paper Pregnancy and Childbirth. All the authors accept full responsibility pertaining to the manuscript\u0026rsquo;s delivery and contents.\u003c/p\u003e\n\u003cp\u003eAcknowledgements\u003c/p\u003e\n\u003cp\u003eNot applicable.\u0026nbsp;\u003c/p\u003e"},{"header":"References","content":"\u003col\u003e\n\u003cli\u003eLiu Y, Chen S, Z\u0026uuml; L, Black GC, Choy M-K, Li N, Keavney BD (2019) Global birth prevalence of congenital heart defects 1970-2017: updated systematic review and meta-analysis of 260 studies. Int J Epidemiol 48:455\u0026ndash;463\u003c/li\u003e\n\u003cli\u003eLevey A, Glickstein JS, Kleinman CS, Levasseur SM, Chen J, Gersony WM, Williams IA (2010) The impact of prenatal diagnosis of complex congenital heart disease on neonatal outcomes. Pediatr Cardiol 31:587\u0026ndash;597\u003c/li\u003e\n\u003cli\u003eTworetzky W, McElhinney DB, Reddy VM, Brook MM, Hanley FL, Silverman NH (2001) Improved surgical outcome after fetal diagnosis of hypoplastic left heart syndrome. Circulation 103:1269\u0026ndash;1273\u003c/li\u003e\n\u003cli\u003eDonofrio MT, Moon-Grady AJ, Hornberger LK, et al (2014) Diagnosis and treatment of fetal cardiac disease: A scientific statement from the american heart association. Circulation 129:2183\u0026ndash;2242\u003c/li\u003e\n\u003cli\u003eHolmes KW, Huang JH, Gutshall K, Kim A, Ronai C, Madriago EJ (2022) Fetal counseling for congenital heart disease: is communication effective? Journal of Maternal-Fetal and Neonatal Medicine 35:5049\u0026ndash;5053\u003c/li\u003e\n\u003cli\u003eWilliams IA, Shaw R, Kleinman CS, Gersony WM, Prakash A, Levasseur SM, Glickstein JS (2008) Parental understanding of neonatal congenital heart disease. Pediatr Cardiol 29:1059\u0026ndash;1065\u003c/li\u003e\n\u003cli\u003eCheuk DKL, Wong SMY, Choi YP, Chau AKT, Cheung YF (2004) Parents\u0026rsquo; understanding of their child\u0026rsquo;s congenital heart disease. Heart 90:435\u0026ndash;9\u003c/li\u003e\n\u003cli\u003eShikany AR, Parrott A, James J, Madueme P, Nicole Weaver K, Cassidy C, Khoury PR, Miller EM (2019) Left ventricular outflow tract obstruction: Uptake of familial cardiac screening and parental knowledge from a single tertiary care center. J Genet Couns 28:779\u0026ndash;789\u003c/li\u003e\n\u003cli\u003eZupancic JAF, Kirpalani H, Barrett J, Stewart S, Gafni A, Streiner D, Beecroft ML, Smith P (2002) Characterising doctor-parent communication in counselling for impending preterm delivery. Arch Dis Child Fetal Neonatal Ed. https://doi.org/10.1136/fn.87.2.f113\u003c/li\u003e\n\u003cli\u003eKovacevic A, Simmelbauer A, Starystach S, Els\u0026auml;sser M, M\u0026uuml;ller A, B\u0026auml;r S, Gorenflo M (2020) Counseling for Prenatal Congenital Heart Disease\u0026mdash;Recommendations Based on Empirical Assessment of Counseling Success. Front Pediatr. https://doi.org/10.3389/fped.2020.00026\u003c/li\u003e\n\u003cli\u003eSanders LM, Shaw JS, Guez G, Baur C, Rudd R (2009) Health Literacy and Child Health Promotion: Implications for Research, Clinical Care, and Public Policy. Pediatrics 124:S306\u0026ndash;S314\u003c/li\u003e\n\u003cli\u003eDeWalt DA, Hink A (2009) Health Literacy and Child Health Outcomes: A Systematic Review of the Literature. Pediatrics 124:S265\u0026ndash;S274\u003c/li\u003e\n\u003cli\u003eMorrison AK, Glick A, Shonna Yin H (2019) Health Literacy: Implications for Child Health. Pediatr Rev 40:263\u0026ndash;277\u003c/li\u003e\n\u003cli\u003eBratt E-L, J\u0026auml;rvholm S, Ekman-Joelsson B-M, Mattson L-\u0026Aring;, Mellander M (2015) Parent\u0026rsquo;s experiences of counselling and their need for support following a prenatal diagnosis of congenital heart disease--a qualitative study in a Swedish context. BMC Pregnancy Childbirth 15:171\u003c/li\u003e\n\u003cli\u003eBoss RD, Donohue PK, Arnold RM (2010) Adolescent mothers in the NICU: How much do they understand. Journal of Perinatology 30:286\u0026ndash;290\u003c/li\u003e\n\u003cli\u003eArya B, Glickstein JS, Levasseur SM, Williams IA (2013) Parents of children with congenital heart disease prefer more information than cardiologists provide. Congenit Heart Dis 8:78\u0026ndash;85\u003c/li\u003e\n\u003cli\u003eGunning MD, Denison FC, Stockley CJ, Ho SP, Sandhu HK, Reynolds RM (2010) Assessing maternal anxiety in pregnancy with the State‐Trait Anxiety Inventory (STAI): issues of validity, location and participation. http://dx.doi.org/101080/02646830903487300 28:266\u0026ndash;273\u003c/li\u003e\n\u003cli\u003eMarteau TM, Bekker H (1992) The development of a six‐item short‐form of the state scale of the Spielberger State\u0026mdash;Trait Anxiety Inventory (STAI). British Journal of Clinical Psychology 31:301\u0026ndash;306\u003c/li\u003e\n\u003cli\u003eBuela-Casal G, Guill\u0026eacute;n-Riquelme A (2017) Versi\u0026oacute;n breve de la adaptaci\u0026oacute;n espa\u0026ntilde;ola del State-Trait Anxiety Inventory. International Journal of Clinical and Health Psychology 17:261\u0026ndash;268\u003c/li\u003e\n\u003cli\u003eMicrosoft Corporation (2018) Microsoft Excel. \u003c/li\u003e\n\u003cli\u003eR Core Team (2013) R: A language and environment for statistical computing. R Foundation for Statistical Computing. \u003c/li\u003e\n\u003cli\u003eRStudio Team (2022) RStudio: Integrated Development Environment for R. \u003c/li\u003e\n\u003cli\u003eWeiss BD, Schwartzberg JG, Davis TC, Parker RM, Williams M V, Wang CC Health Literacy A Manual for Clinicians With contributions from. \u003c/li\u003e\n\u003cli\u003eUS Census Bureau (2015) Detailed Languages Spoken at Home and Ability to Speak English. https://www.census.gov/data/tables/2013/demo/2009-2013-lang-tables.html. Accessed 30 Jun 2022\u003c/li\u003e\n\u003cli\u003eFlores G, Abreu M, Tomany-Korman SC (2005) Limited english proficiency, primary language at home, and disparities in children\u0026rsquo;s health care: how language barriers are measured matters. Public Health Rep 120:418\u0026ndash;430\u003c/li\u003e\n\u003cli\u003eYu SM, Singh GK (2009) Household Language Use and Health Care Access, Unmet Need, and Family Impact Among CSHCN. Pediatrics 124:S414\u0026ndash;S419\u003c/li\u003e\n\u003cli\u003eEneriz-Wiemer M, Sanders LM, Barr DA, Mendoza FS (2014) Parental Limited English Proficiency and Health Outcomes for Children With Special Health Care Needs: A Systematic Review. Acad Pediatr 14:128\u0026ndash;136\u003c/li\u003e\n\u003cli\u003eNational Committee for Quality Assuarance (2016) A Practical Guide to Implementing the National CLAS Standards. 1\u0026ndash;59\u003c/li\u003e\n\u003cli\u003eNgo-Metzger Q, Sorkin DH, Phillips RS, Greenfield S, Massagli MP, Clarridge B, Kaplan SH (2007) Providing high-quality care for limited English proficient patients: the importance of language concordance and interpreter use. J Gen Intern Med 22 Suppl 2:324\u0026ndash;330\u003c/li\u003e\n\u003cli\u003eWilson E, Chen AH, Grumbach K, Wang F, Fernandez A (2005) Effects of limited English proficiency and physician language on health care comprehension. J Gen Intern Med 20:800\u0026ndash;806\u003c/li\u003e\n\u003cli\u003eJaramillo J, Snyder E, Dunlap JL, Wright R, Mendoza F, Bruzoni M (2016) The Hispanic Clinic for Pediatric Surgery: A model to improve parent-provider communication for Hispanic pediatric surgery patients. J Pediatr Surg 51:670\u0026ndash;674\u003c/li\u003e\n\u003cli\u003eCarlsson T, Bergman G, Marttala UM, Wadensten B, Mattsson E (2015) Information following a diagnosis of congenital heart defect: Experiences among parents to prenatally diagnosed children. PLoS One 10:e0117995\u003c/li\u003e\n\u003cli\u003eNeedle JS, O\u0026rsquo;Riordan M, Smith PG (2009) Parental anxiety and medical comprehension within 24 hrs of a child\u0026rsquo;s admission to the pediatric intensive care unit*. Pediatr Crit Care Med 10:668\u0026ndash;674\u003c/li\u003e\n\u003cli\u003eWerner O, El Louali F, Ovaert C (2018) Parental anxiety and comprehension before cardiac intervention in a population of children with congenital heart disease (CHD): Contributing factors and consequences. Archives of Cardiovascular Diseases Supplements 10:135\u003c/li\u003e\n\u003cli\u003eChanning A, Rosenberg K, Monk C, Kleinman CS, Glickstein JS, Levasseur SM, Simpson LL, Williams IA (2012) Maternal anxiety associated with fetal echocardiography. Open J Pediatr 2:143\u0026ndash;149\u003c/li\u003e\n\u003c/ol\u003e"}],"fulltextSource":"","fullText":"","funders":[],"hasAdminPriorityOnWorkflow":false,"hasManuscriptDocX":true,"hasOptedInToPreprint":true,"hasPassedJournalQc":"","hasAnyPriority":false,"hideJournal":true,"highlight":"","institution":"","isAcceptedByJournal":false,"isAuthorSuppliedPdf":false,"isDeskRejected":"","isHiddenFromSearch":false,"isInQc":false,"isInWorkflow":false,"isPdf":false,"isPdfUpToDate":true,"isWithdrawnOrRetracted":false,"journal":{"display":true,"email":"[email protected]","identity":"researchsquare","isNatureJournal":false,"hasQc":true,"allowDirectSubmit":true,"externalIdentity":"","sideBox":"","snPcode":"","submissionUrl":"/submission","title":"Research Square","twitterHandle":"researchsquare","acdcEnabled":true,"dfaEnabled":false,"editorialSystem":"","reportingPortfolio":"","inReviewEnabled":false,"inReviewRevisionsEnabled":true},"keywords":"Neonates, fetal echocardiogram, prenatal consults, parental understanding, language barriers","lastPublishedDoi":"10.21203/rs.3.rs-3915422/v1","lastPublishedDoiUrl":"https://doi.org/10.21203/rs.3.rs-3915422/v1","license":{"name":"CC BY 4.0","url":"https://creativecommons.org/licenses/by/4.0/"},"manuscriptAbstract":"\u003ch2\u003eBackground\u003c/h2\u003e \u003cp\u003eCongenital heart disease is the most common congenital malformation worldwide. Prenatal diagnosis provides the opportunity to counsel parents and help them prepare for their future with their child. This study aimed to assess parental knowledge following a prenatal consultation with a pediatric cardiologist for a normal fetal echocardiogram. Improved parental communication in prenatal consultations with pediatric cardiologists is critical to improving outcomes for these children and their families.\u003c/p\u003e\u003ch2\u003eMethods.\u003c/h2\u003e \u003cp\u003eThis prospective questionnaire based descriptive study was conducted at a single regional perinatal center with a level four neonatal intensive care unit and a dedicated infant cardiac intensive care unit. After prenatal consults with a pediatric cardiologist, surveys were administered to consenting parents that received a normal fetal echocardiogram result and their pediatric cardiologists.\u003c/p\u003e\u003ch2\u003eResults\u003c/h2\u003e \u003cp\u003eFrom November 2020 to April 2021, 50 parents completed the survey, 34 of whom reported English as their primary language. Of the 16 parents reporting a different primary language, ten parents preferred the consultation to occur in English, and six preferred the consultation in Spanish. Multivariate regression analysis revealed that the presence of a language barrier was associated with decreased understanding of the limitations of a normal fetal echocardiogram (14% vs 84%, p\u0026thinsp;\u0026lt;\u0026thinsp;0.001) and follow-up recommendations (29% vs 91%, p\u0026thinsp;\u0026lt;\u0026thinsp;0.01). There was a trend toward decreased understanding with lower education levels, but this difference was not statistically significant. Despite limitations in comprehension, parents and cardiologists were satisfied with the consults and perceived parental understanding as good or extremely good.\u003c/p\u003e\u003ch2\u003eConclusion\u003c/h2\u003e \u003cp\u003eLimited English proficiency is an important barrier to comprehension during prenatal consultations with pediatric cardiologists even when best practices of in-person medical interpreters are used. Objective evaluation of parental understanding is critical given that parents and cardiologists may not accurately perceive limitations in knowledge.\u003c/p\u003e","manuscriptTitle":"Missing the heart of the matter: Limitations of parental understanding during prenatal consultations for normal fetal echocardiograms","msid":"","msnumber":"","nonDraftVersions":[{"code":1,"date":"2024-02-15 16:49:33","doi":"10.21203/rs.3.rs-3915422/v1","editorialEvents":[{"type":"communityComments","content":0}],"status":"published","journal":{"display":true,"email":"[email protected]","identity":"researchsquare","isNatureJournal":false,"hasQc":true,"allowDirectSubmit":true,"externalIdentity":"","sideBox":"","snPcode":"","submissionUrl":"/submission","title":"Research Square","twitterHandle":"researchsquare","acdcEnabled":true,"dfaEnabled":false,"editorialSystem":"","reportingPortfolio":"","inReviewEnabled":false,"inReviewRevisionsEnabled":true}}],"origin":"","ownerIdentity":"1ea87918-9c68-4daa-93ff-3b13a75abd95","owner":[],"postedDate":"February 15th, 2024","published":true,"recentEditorialEvents":[],"rejectedJournal":[],"revision":"","amendment":"","status":"posted","subjectAreas":[],"tags":[],"updatedAt":"2024-11-07T16:08:45+00:00","versionOfRecord":[],"versionCreatedAt":"2024-02-15 16:49:33","video":"","vorDoi":"","vorDoiUrl":"","workflowStages":[]},"version":"v1","identity":"rs-3915422","journalConfig":"researchsquare"},"__N_SSP":true},"page":"/article/[identity]/[[...version]]","query":{"redirect":"/article/rs-3915422","identity":"rs-3915422","version":["v1"]},"buildId":"qtupq5eGEP_6zYnWcrvyt","isFallback":false,"isExperimentalCompile":false,"dynamicIds":[84888],"gssp":true,"scriptLoader":[]}