Walsh Michael J, Verghese George R, Ferguson M Eric, Fino Nora F, Goldberg David J, Owens Sonal T, Pinto Nelangi, Zyblewski Sinai C, Quartermain Michael D
Wake Forest School of Medicine, Medical Center Boulevard, Winston-Salem, NC, 27157, USA.
Emory University School of Medicine, Atlanta, GA, USA.
Pediatr Cardiol. 2017 Jun;38(5):946-958. doi: 10.1007/s00246-017-1601-1. Epub 2017 Mar 27.
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.
在为被诊断患有左心发育不全综合征（HLHS）的胎儿的父母提供咨询时，儿科心脏病专家在塑造家庭对未来数月乃至数年的期望方面发挥着关键作用。然而，尚未对最有效的咨询方法进行研究，而且医生之间可能存在显著差异。采用雪球抽样法对进行胎儿超声心动图检查的儿科心脏病专家进行基于网络的调查。201名医生做出了回应（61%为男性，81%来自学术中心，95%来自美国），平均从业经验为12年。大多数受访者（73%）通常在妊娠20至24周之间收到HLHS的首次转诊。大多数医生单独为家庭提供咨询（54%），而其他医生则与护士（35%）、社会工作者（12%）和/或母胎医学同事（15%）一起提供咨询。79%的受访者讨论了终止妊娠的问题，尽管15%的人不知道他们所在州的终止妊娠法定时限。虽然初次咨询会议通常会描述HLHS的典型早期后果，但该疾病的许多长期后遗症却未得到普遍讨论。咨询内容受所在地区影响，但不受执业环境、经验或胎儿数量影响。受访者指出了多个限制他们咨询工作的障碍。我们的数据表明，当前的咨询工作往往未能涵盖重要信息。对HLHS长期后遗症进行全面讨论存在明显障碍，这可能导致现实与家庭对姑息性HLHS自然病程的理解之间出现脱节。存在改进咨询工作的机会，进行更正规的培训可能会带来益处。
