Success and quality of medical counseling Parental Counseling after Prenatal Diagnosis of Congenital Heart Disease

Background: Congenital heart disease is one of the most common causes of major congenital anomalies. Prenatal detection of those abnormalities has been improving continuously over the last decades. The task of the fetal / pediatric cardiologist or the maternal fetal medicine specialists is not only to make an accurate diagnosis, but also to counsel the parents effectively in terms of explaining the nature of the abnormality, its significance and effects on the infants functioning and survival, as well as treatment options after delivery. Therefore, effective counselling should be considered as important as making the correct diagnosis. Despite existing recommendations for the practice of fetal cardiology, including counseling, there seems to be a demand for more parental-guiding information.

Objectives: 1) To develop a questionnaire suitable to assess parental needs for counseling after prenatal diagnosis of congenital heart disease in the fetus. 2) To carry out a mono-centered survey. 3) To identify criteria for sufficient counselling in the specific setting of prenatal diagnosis of congenital heart disease on empirical bases 4) To improve parental counseling 5) To develop guidelines.

• Simmelbauer A., Bär S., Starystach S., Elsässer M., Sohn C., Müller A., Gorenflo M., Kovacevic A (2018): Assessment of Needs for Counseling after Prenatal Diagnosis of Congenital Heart Disease: Development and Evaluation of a Questionnaire. Abstract in: The Thoracic cardiovascular Surgeon 66 (S 02). S.111-138; DOI: 10.1055/s-0038-1628358
• Simmelbauer A., Bär S., Starystach S., Elsässer M., Sohn C., Müller A., Gorenflo M., Kovacevic A. (2018): Assessment of needs for counseling after prenatal diagnosis of congenital heart disease: development and evaluation of a questionnaire. E-Poster at the 50th Annual Meeting of the German Society of Paediatric Cardiology in Leipzig from February 17th - 20th, 2018.
• Kovacevic A., Simmelbauer A., Starystach S., Elsässer M., Sohn C., Müller A., Bär S., Gorenflo M. (2018): How to counsel parents after prenatal diagnosis of congenital heart disease? A multidisciplinary approach to develop a questionnaire. Cardiology in the Young, 28 (S1), S. 78. doi:10.1017/S1047951118000318 

  https://www.cambridge.org/core/journals/cardiology-in-the-young/article…

• Kovacevic A., Simmelbauer A., Starystach S., Elsässer M., Sohn C., Müller A., Bär S., Gorenflo M. (2018): Assessment of needs for counseling after prenatal diagnosis of congenital heart disease – a multidisciplinary approach. In: Klinische Pädiatrie. Clinical Research and Practice in Pediatrics. 17. Juli 2018 (eFirst) DOI: 10.1055/a-0633-3331 ISSN 0300-8630. Print 5/2018, S. 251-256
• Kovacevic A., Bär S., Starystach S., Simmelbauer A., Elsässer M., Müller A., Mohammadi Motlagh A., Oberhoffer-Fritz R., Ostermayer E., Ewert P., Gorenflo M. and Wacker-Gussmann A. (2020): Objective assessment of counselling for fetal heart defects: An interdisciplinary multicenter study. Journal of Clinical Medicine 9 (2), 467
• Kovacevic A., Simmelbauer A., Starystach S., Elsässer M., Müller A., Bär S. and Gorenflo M. (2020): Counseling for Prenatal Congenital Heart Disease - Recommendations Based on Empirical Assessment of Counseling Success. In: Frontiers in Pediatrics, Pediatric Cardiology 8:26. 

  https://doi.org/10.3389/fped.2020.00026

• Kovacevic A., Elsässer M., Flur H., Müller A., Starystach S., Bär S. and Gorenflo M. (2020): Counseling for Fetal Heart Disease – Current Standards and Best Practice. In: Translational Pediatrics. DOI: 10.21037/tp-20-181
• Kovacevic, A.; Bär, S.; Starystach, S.; Elsässer, M.; van der Locht, T.; Mohammadi Motlagh, A.; Ostermayer, E.; Oberhoffer-Fritz, R.; Ewert, P.; Gorenflo, M. & Wacker-Gussmann, A. (2021): Fetal Cardiac Services during the COVID-19 Pandemic: How Does It Affect Parental Counseling? In: J. Clin. Med. 10, 3423. 

  https://doi.org/10.3390/jcm10153423

• Kovacevic, A.; Wacker-Gussmann, A.; Bär, S.; Elsässer, M.; Mohammadi Motlag, A.; Oberhoffer-Fritz, R.; Ewert, P.; Gorenflo, M. & Starystach, S. (2022): Parents’ Perspectives on Counseling for Fetal Heart Disease: What Matters Most? In: Cardiovascular Risk Factors in Childhood and Adolescence, Special Issue of Journal of Clinical Medicine, 11(1), 278. 

  https://doi.org/10.3390/jcm11010278

• German Heart Center Munich, Carl Gustav Carus University Hospital at the Dresden University of Technology: Multicenter Data Collection
• Luciane Alves da Rocha Amorim, University Hospital Getúlio Vargas (HUGV), Federal University of Amazonas (UFAM), Manaus, Brazil: Cross-Cultural Adaptation of a Prenatal Counseling Questionnaire for Congenital Heart Disease in Brazil