Montreal Children's Hospital, Division of Cardiology, 2300 Tupper St, Montreal, Quebec, H3H 1P3, Canada.
Pediatrics. 2010 Mar;125(3):e625-30. doi: 10.1542/peds.2009-1678. Epub 2010 Feb 15.
We conducted a survey to determine which management options pediatric cardiologists and cardiac surgeons in North America discuss and recommend when counseling parents after the diagnosis of hypoplastic left heart syndrome (HLHS).
Pediatric cardiologists and cardiac surgeons across North America were asked to complete an anonymous, Internet-based survey about their attitudes and practices regarding the management of HLHS.
We contacted 1621 pediatric cardiologists and surgeons, of whom 749 (46%) completed the survey. When counseling parents of newborns with HLHS, 99.7% of respondents discussed staged palliative surgery, 67% discussed cardiac transplantation, and 62.2% discussed compassionate care without surgery. Only a minority (14.9%) discussed all of those options. Staged palliative surgery was recommended over cardiac transplantation or compassionate care without surgery by 76.2% of respondents. When counseling parents after prenatal diagnosis of HLHS, 98.8% of respondents discussed continuation of pregnancy with staged palliative surgery after birth, 53.5% discussed continuation of pregnancy with cardiac transplantation after birth, 56.9% discussed continuation of pregnancy with compassionate care after birth, and 74.3% discussed termination of pregnancy. Only 36.5% discussed all of those options. Continuation of pregnancy with staged palliative surgery after birth was recommended over the other options by 56% of respondents.
Virtually all North American pediatric cardiologists and cardiac surgeons surveyed discuss a surgical intervention when counseling parents about the care of their child or fetus with HLHS. However, only a minority discuss all options. Most physicians recommend staged palliative surgery for management of HLHS.
我们进行了一项调查，以确定北美的儿科心脏病专家和心脏外科医生在为患有左心发育不全综合征（HLHS）的患儿的父母提供咨询时会讨论并推荐哪些治疗选择。
我们要求北美各地的儿科心脏病专家和心脏外科医生完成一项关于其在 HLHS 管理方面的态度和实践的匿名、基于互联网的调查。
我们联系了 1621 名儿科心脏病专家和外科医生，其中 749 名（46%）完成了调查。在为患有 HLHS 的新生儿父母提供咨询时，99.7%的受访者讨论了分期姑息手术，67%讨论了心脏移植，62.2%讨论了不进行手术的同情治疗。只有少数（14.9%）讨论了所有这些选择。76.2%的受访者建议分期姑息手术而非心脏移植或不进行手术的同情治疗。在对产前诊断出 HLHS 的父母进行咨询时，98.8%的受访者讨论了在出生后进行分期姑息手术继续妊娠，53.5%讨论了在出生后进行心脏移植继续妊娠，56.9%讨论了在出生后进行同情治疗继续妊娠，74.3%讨论了终止妊娠。只有 36.5%的受访者讨论了所有这些选择。56%的受访者建议在出生后进行分期姑息手术继续妊娠，而不是其他选择。
几乎所有接受调查的北美儿科心脏病专家和心脏外科医生在为 HLHS 患儿或胎儿的父母提供护理咨询时都会讨论手术干预。然而，只有少数人讨论了所有的选择。大多数医生建议对 HLHS 进行分期姑息手术治疗。
