Counseling Practices for Fetal Hypoplastic Left Heart Syndrome
| Autor: | Michael J. Walsh, Michael D. Quartermain, Nelangi M. Pinto, David J. Goldberg, Sonal T. Owens, George R. Verghese, Nora F. Fino, Sinai C. Zyblewski, M. Eric Ferguson |
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| Rok vydání: | 2016 |
| Předmět: |
Counseling
Male medicine.medical_specialty Pediatrics medicine.medical_treatment Disease 030204 cardiovascular system & hematology Hypoplastic left heart syndrome 03 medical and health sciences 0302 clinical medicine Hypoplastic Left Heart Syndrome medicine Humans 030212 general & internal medicine Pregnancy Internet medicine.diagnostic_test business.industry Prenatal Care Professional Practice Vascular surgery medicine.disease Natural history Snowball sampling Cross-Sectional Studies Echocardiography Health Care Surveys Pediatrics Perinatology and Child Health Norwood procedure Female Cardiology and Cardiovascular Medicine business Fetal echocardiography |
| Zdroj: | Pediatric cardiology. 38(5) |
| ISSN: | 1432-1971 |
| Popis: | 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. |
| Databáze: | OpenAIRE |
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