Parental Counseling after Prenatal Diagnosis of Congenital Heart Disease.
(Kriterien einer angemessenen medizinischen Aufklärung und Beratung von Eltern, die ein Kind mit angeborenem Herzfehler erwarten)
apl. Prof. Dr. Stefan Bär & Dr. Sebastian Starystach
Cooperation partner: Prof. Dr. Alexander Kovacevic, Heidelberg University Hospital, Department of Paediatric and Congenital Cardiology
Project duration: started in 2016
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: A) To develop a questionnaire suitable to assess parental needs for counseling after prenatal diagnosis of congenital heart disease in the fetus. B) To carry out a mono-centered survey C) To identify criteria for sufficient counselling in the specific setting of prenatal diagnosis of congenital heart disease on empirical bases D) To improve parental counseling E) To develop guidelines.
UPDATE 2019: The project is now being continued as a multi-center study (together with German Heart Center Munich).
UPDATE 2020: In the current survey we are trying to determine the influence of the COVID pandemic on the counselling situation.
UPDATE 2023: Collaboration in the project extends to the Carl Gustav Carus University Hospital at the Dresden University of Technology.
Publications:
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/52nd-annual-meeting-of-the-association-for-european-paediatric-and-congenital-cardiology-aepc-megaron-athens-international-conference-centre-athens-greece-may-912-2018/C876AAF94F420D5990F579FA9FFD89B9
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