Counseling for Prenatal Congenital Heart Disease—Recommendations Based on Empirical Assessment of Counseling Success

Kovacevic, Alexander; Simmelbauer, Andreas; Starystach, Sebastian; Elsässer, Michael; Müller, Andreas; Bär, Stefan; Gorenflo, Matthias

doi:10.3389/fped.2020.00026

Cited by 29 publications

(34 citation statements)

References 23 publications

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“…Identifying modifiers for effective counseling is therefore worthy of exploration. Different parental needs have been specified and questionnaires have been published assessing effectiveness of counseling (1)(2)(3)13,14). Prenatal diagnosis of CHD in the unborn child is undoubtedly a traumatic event for parents which may influence their emotions significantly and finally also their decision-making depending on the cardiac as well as potential extra-cardiac diagnoses (5,18).…”

Section: Review Articlementioning

confidence: 99%

“…After initial counseling, written information is valued by parents (14). While one group could show that repeated counseling sessions seem useful, others could not prove this finding, indicating that quality-not quantity-seems more important (2,14). A separate counseling room to ensure a quite surrounding has been shown to be beneficial to achieve effective counseling, which should be uninterrupted and of adequate duration (2,3).…”

Section: Identified Parental Needs For Counselingmentioning

confidence: 99%

“…The value of internet-based information platforms is controversially discussed. While undoubtedly high-quality web-pages of e.g., Pediatric Heart Centers are reliable information sources, unfiltered onlinedata are often misleading (2,3,13,14).…”

Section: Identified Parental Needs For Counselingmentioning

confidence: 99%

“…Effective parental counseling for prenatal congenital heart disease (CHD) is one of the main tasks for fetal cardiologists or maternal-fetal medicine (MFM) specialists after diagnosing CHD in the fetus. It has been shown to be a complex and multidimensional process with multiple factors affecting counseling success (1)(2)(3). In contrast relatively little research has been undertaken in this field (4).…”

Section: Introductionmentioning

confidence: 99%

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Counseling for fetal heart disease—current standards and best practice

Kovacevic¹,

Elsässer²,

Fluhr³

et al. 2021

Transl Pediatr

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Congenital heart disease (CHD) is the most common cause of major congenital anomalies affecting newborns. Prenatal detection of CHD has been improving continuously during the last two decades due to technical advances and thus optimized fetal cardiac imaging. Besides the in-utero diagnosis of CHD effective parental counseling is an integral part of any Fetal Cardiology Program. However, studies on the most effective techniques are scarce, as well as data on empirical assessment of counseling and its effectiveness. In this review article, we summarize current guidelines from different international associations and societies. We provide an updated literature overview evaluating current standards of counseling with regard to parental needs. This includes ethical aspects, counseling for univentricular disease and in-utero cardiac interventions. We discuss our method to assess counseling success for fetal heart defects by exploring different analytical dimensions that may be considered helpful in order to improve efficacy. Finally, we present a proposal of how to optimize a setting for counseling based on the current literature and our own data. In summary, parental counseling for fetal heart disease is complex and multidimensional. Significant expertise in fetal cardiology and physiology, potential progression of CHD, postnatal treatment strategies and knowledge of long-term sequelae is necessary. A structured approach, together with continuous improvement of communicative skills, may lead to more effective counseling for parents following a diagnosis of CHD in the fetus.

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Section: Review Articlementioning

confidence: 99%

Section: Identified Parental Needs For Counselingmentioning

confidence: 99%

Section: Identified Parental Needs For Counselingmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

See 2 more Smart Citations

Counseling for fetal heart disease—current standards and best practice

Kovacevic¹,

Elsässer²,

Fluhr³

et al. 2021

Transl Pediatr

Self Cite

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“… 6 , 7 A search for the cause of CHD and identification of the complicating inherited syndromes are therefore given a high priority in the currently prenatal diagnosis of CHD. 8 , 9 …”

Section: Introductionmentioning

confidence: 99%

SNP Array as a Tool for Prenatal Diagnosis of Congenital Heart Disease Screened by Echocardiography: Implications for Precision Assessment of Fetal Prognosis

Huang¹,

Cai²,

Wang³

et al. 2021

RMHP

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Objective This study aimed to examine the effectiveness of the SNP array for the prenatal diagnosis of congenital heart disease (CHD) screened by echocardiography. Patients and Methods A total of 356 pregnant women with fetal congenital heart malformations revealed by echocardiography at the Center for Prenatal Diagnosis of Fujian Maternal and Children Hospital during the period from November 2016 through July 2019 were recruited. The fetuses were assigned into three cohorts, including 142 with a single cardiac malformation, 106 with multiple cardiac malformations and 108 with cardiac and extracardiac malformations. All fetuses underwent chromosomal karyotyping and SNP array simultaneously, and the effectiveness of the SNP array for the prenatal diagnosis of CHD was evaluated. Results The overall prevalence of abnormal karyotypes was 9.3% among the 356 fetuses with CHD, and a higher proportion was found in fetuses with cardiac and extracardiac malformations (18.5%) than in those with single (5.6%) or multiple cardiac malformations (4.7%) ( P <0.05). Consistent with karyotype analysis, SNP array detected an additional 25 fetuses with pathogenic copy number variations (CNVs), seven with variant of unknown significance (VOUS) and seven with benign CNVs, and a lower proportion of abnormal CNV was found in fetuses with a single cardiac malformation (4.2%) than in those with multiple cardiac malformations (9.4%) or cardiac and extracardiac malformations (14.8%) ( P <0.05). Among the 33 fetuses with chromosomal abnormality, postnatal follow-up showed termination of pregnancy in 25 with pathogenic CNVs, one with VOUS, and six with normal karyotypes and SNP array findings but severe multiple malformations by ultrasonography. Conclusion SNP array increases the overall detection of abnormal CNVs by 9%, which improves the detection of CNVs associated with CHD. SNP array may serve as a tool for prenatal diagnosis of CHD that facilitates the discovery of pathogenic genes associated with CHD and provide valuable insights into the precision assessment of fetal prognosis during the prenatal counseling.

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Evaluating How Beliefs Among Pediatric Cardiology Providers May Affect Fetal Cardiac Counseling—A National Perspective

Haxel,

Ronai,

Martens

et al. 2024

Prenatal Diagnosis

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BackgroundPrenatal counseling following a fetal diagnosis of critical congenital heart disease (CCHD) is challenging and requires delivery of detailed and complete information to ensure appropriate decision making and pregnancy support.MethodsAn anonymous 50‐item survey was distributed to providers who performed fetal cardiac counseling. The primary purpose was to evaluate on a national scale physician beliefs and attitudes toward available choices after a fetal diagnosis of CCHD and their association with reported counseling practices. Participants were specifically asked to indicate how likely they were to recommend postnatal interventional and/or surgical treatment, postnatal palliative care, or termination of pregnancy. The primary outcome variables were provider responses to statements about pregnancies complicated by CCHD diagnosed in utero.ResultsThere were 138 respondents, with most somewhat or strongly agreeing that providing counseling on surgical and catheter‐based interventions anticipated in the short‐ and long‐term (99%, 136/138), counseling on a “comfort care” alternative with limited intervention (97%, 134/138), and options for pregnancy termination at different stages (91%, 126/138) should be included. Physicians that disagreed with the statement “some life is better than no life at all” were statistically more likely (p < 0.001) to report that prenatal counseling regarding “options for pregnancy termination services at different stages of pregnancy” was important. There was a statistically significant difference in the counseling provided to parents based on the physician's personal and professional views on palliative care and termination of pregnancy.ConclusionPhysicians' self‐reported beliefs impact the counseling content provided to families in the setting of a prenatal diagnosis of CCHD.

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Counseling for Prenatal Congenital Heart Disease—Recommendations Based on Empirical Assessment of Counseling Success

Cited by 29 publications

References 23 publications

Counseling for fetal heart disease—current standards and best practice

Counseling for fetal heart disease—current standards and best practice

SNP Array as a Tool for Prenatal Diagnosis of Congenital Heart Disease Screened by Echocardiography: Implications for Precision Assessment of Fetal Prognosis

Evaluating How Beliefs Among Pediatric Cardiology Providers May Affect Fetal Cardiac Counseling—A National Perspective

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