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Erschienen in: Pediatric Cardiology 5/2017

27.03.2017 | Original Article

Counseling Practices for Fetal Hypoplastic Left Heart Syndrome

verfasst von: Michael J. Walsh, George R. Verghese, M. Eric Ferguson, Nora F. Fino, David J. Goldberg, Sonal T. Owens, Nelangi Pinto, Sinai C. Zyblewski, Michael D. Quartermain

Erschienen in: Pediatric Cardiology | Ausgabe 5/2017

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Abstract

While counseling parents of a fetus diagnosed with hypoplastic left heart syndrome (HLHS), pediatric cardiologists play a critical role in shaping a family’s expectations for the months and years to come. However, techniques for the most effective counseling practices have not been studied, and significant variation among physicians is likely present. Web-based survey of pediatric cardiologists that perform fetal echocardiography using snowball sampling. 201 physicians responded (61% male, 81% from academic centers, and 95% from the U.S.), with an average experience of 12 years. The majority of respondents (73%) typically received initial referrals for HLHS between 20 and 24 weeks of gestation. Most physicians counsel families alone (54%), while others counsel with a nurse (35%), social worker (12%), and/or maternal-fetal medicine colleague (15%). Termination of pregnancy was discussed by 79% of respondents, although 15% did not know their state’s legal limit for termination. While initial counseling sessions routinely described the typical earlier ramifications of HLHS, many long-term sequelae of the disease were not commonly discussed. Content of counseling was affected by region of the country, but not by practice setting, experience, or fetal volume. Respondents identified multiple barriers that limited their counseling practices. Our data suggest that current counseling practices often fail to cover important information. Perceived barriers to a full discourse on long-term sequelae of HLHS are common and may lead to a disconnect between reality and a family’s understanding of the natural history of palliated HLHS. Opportunities to improve counseling practices exist, and there may be benefits to gain from more formal training.
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Metadaten
Titel
Counseling Practices for Fetal Hypoplastic Left Heart Syndrome
verfasst von
Michael J. Walsh
George R. Verghese
M. Eric Ferguson
Nora F. Fino
David J. Goldberg
Sonal T. Owens
Nelangi Pinto
Sinai C. Zyblewski
Michael D. Quartermain
Publikationsdatum
27.03.2017
Verlag
Springer US
Erschienen in
Pediatric Cardiology / Ausgabe 5/2017
Print ISSN: 0172-0643
Elektronische ISSN: 1432-1971
DOI
https://doi.org/10.1007/s00246-017-1601-1

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