Counseling for fetal heart disease—current standards and best practice

Abstract

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.

A retrospective analysis of fetal heart defects in China: Investigating the influencing factors of pregnancy outcomes and evaluating the value of the multidisciplinary team cooperation approach

“…Multidisciplinary team counseling can help family members understand precisely and comprehensively the subtype, available management and treatment options, and the long-term prognosis of fetal heart abnormalities and facilitate decision-making [37][38][39]. In keeping with recent researches [21,40], our results con rmed the signi cant impact of a multidisciplinary team approach on the pregnancy outcomes of fetal cardiac defects.…”

Parents’ Perspectives on Counseling for Fetal Heart Disease: What Matters Most?

“…In summary, our results may serve as paradigm to develop strategies to optimize fetal cardiac care in terms of improving the effectiveness of parental counseling [ 21 , 22 ]. Furthermore, as national guidelines are scarce, our results may be valuable to propose evidence-based strategies and suggest topics to be included during conversation [ 29 ]. In addition, communication skills training for “breaking bad news” in Fetal Cardiology should be implemented.…”

The Role of Nurses in Fetal Cardiology Programs

“…Patients have reported relief and support from nurses after receiving the diagnoses of CHD in their fetus (Bratt et al, 2015;Reid & Gaskin, 2018). Some articles also stressed the importance of continuous, on-going support provided by nurses throughout the patient's pregnancy and beyond (Bratt et al, 2015;Kovacevic et al, 2020b;Kovacevic et al, 2021;Lafranchi & Lincoln, 2015;Lee, 2017). The nurse's presence from preconception to birth allows excellent continuity of care for the patient and family.…”

“…In a study of parental counseling needs, parents reported difficulties with "perceived situational control," which Kovacevic et al (2020b) believed could be alleviated with further and continuous support throughout the pregnancy, including by cardiac specialist nurses (p. 6). Providing contact information for nurses who can be available to answer families' questions throughout the pregnancy can "preserve long-term psychological health of parents" (Kovacevic et al, 2021(Kovacevic et al, , p. 2231.…”