title: Counseling Practices for Fetal Hypoplastic Left Heart Syndrome.
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.
authors.affiliation: Wake Forest School of Medicine, Medical Center Boulevard, Winston-Salem, NC, 27157, USA. mwalsh@wakehealth.edu.
authors.forename: Michael J
authors.initials: MJ
authors.lastname: Walsh
authors.affiliation: Wake Forest School of Medicine, Medical Center Boulevard, Winston-Salem, NC, 27157, USA.
authors.forename: George R
authors.initials: GR
authors.lastname: Verghese
authors.affiliation: Emory University School of Medicine, Atlanta, GA, USA.
authors.forename: M Eric
authors.initials: ME
authors.lastname: Ferguson
authors.affiliation: Wake Forest School of Medicine, Medical Center Boulevard, Winston-Salem, NC, 27157, USA.
authors.forename: Nora F
authors.initials: NF
authors.lastname: Fino
authors.affiliation: The Children's Hospital of Philadelphia, Philadelphia, PA, USA.
authors.forename: David J
authors.initials: DJ
authors.lastname: Goldberg
authors.affiliation: University of Michigan, Ann Arbor, MI, USA.
authors.forename: Sonal T
authors.initials: ST
authors.lastname: Owens
authors.affiliation: University of Utah, Salt Lake City, UT, USA.
authors.forename: Nelangi
authors.initials: N
authors.lastname: Pinto
authors.affiliation: Medical University of South Carolina, Charleston, SC, USA.
authors.forename: Sinai C
authors.initials: SC
authors.lastname: Zyblewski
authors.affiliation: Wake Forest School of Medicine, Medical Center Boulevard, Winston-Salem, NC, 27157, USA.
authors.forename: Michael D
authors.initials: MD
authors.lastname: Quartermain
mesh_terms: D003376:Counseling / Q000379:methods*; D003430:Cross-Sectional Studies; D004452:Echocardiography; D005260:Female; D019538:Health Care Surveys; D006801:Humans; D018636:Hypoplastic Left Heart Syndrome / Q000000981:diagnostic imaging / Q000628:therapy*; D020407:Internet; D008297:Male; D011295:Prenatal Care; D011364:Professional Practice
keywords: Fetal cardiology; Fetal echocardiography; Fontan procedure; Hypoplastic left heart syndrome; Norwood procedure; Protein-losing enteropathy