How pediatricians counsel parents when no "best-choice" management exists - Lessons to be learned from hypoplastic left heart syndrome
How pediatricians counsel parents when no "best-choice" management exists - Lessons to be learned from hypoplastic left heart syndrome
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DOI：
10.1001/archpedi.158.5.436
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发表时间：
2004-05-01
影响因子：
--
通讯作者：
Lo, B
中科院分区：
文献类型：
--
作者：
Kon, AA;Ackerson, L;Lo, B
背景：左心发育不良综合征（HLHS）是一种危及生命的先天性心脏缺陷。三个相互排斥的管理选项存在：诺伍德姑息程序，心脏移植，舒适护理没有外科干预。目的：评估哪些管理选项是呈现给父母的婴儿与HLHS，并确定哪些因素影响医生的recommendation.Design：横断面调查设置：十四个最大的小儿心脏外科中心在美国。参与者：介入治疗：一项调查被分发，询问医生他们向患有HLHS的婴儿的父母提供什么样的选择，他们的建议是什么，以及医生对HLHS结局和人口统计学信息的看法。结果：在454名合格的医生中，257名（57%）回答了调查，其中110名医生向父母推荐治疗。新生儿医生最不可能推荐手术。推荐手术的医生推荐在他们自己的机构进行手术，而不是在其他地方进行手术（比值比，2.80; 95%置信区间，2.24-3.51）。26%的医生不讨论非手术治疗，25%的不进行心脏移植的中心不讨论这种选择。医生的建议，父母是穷人与他们的预测术后outcome.Conclusions：医生的建议，父母是穷人与他们的估计结果，一些医生建议的治疗首选在自己的机构比其他选项，即使他们预测更好的结果从另一种方法。此外，许多医生没有向患有HLHS的婴儿的父母透露所有合理的管理选择。这些调查结果令人怀疑父母是否得到足够的信息，以作出真正知情的决定。
Background: Hypoplastic left heart syndrome (HLHS) is a life-threatening congenital cardiac defect. Three mutually exclusive management options exist: the Nor-wood palliative procedure, cardiac transplantation, and comfort care without surgical intervention.Objectives: To assess which management options are presented to parents of infants with HLHS, and to determine what factors influence physicians' recommendations.Design: Cross-sectional surveySetting: Fourteen of the largest pediatric cardiac surgery centers in the United States.Participants: Attending physicians in neonatology, cardiology, critical care practice, and cardiac surgery.Intervention: A survey was distributed asking physicians what options they present to parents of infants with HLHS and what their recommendations are in general, as well as physician perceptions of HLHS outcomes and demographic information.Main Outcome Measures: Which options physi-cians discuss and which they recommend.Results: Of 454 eligible physicians 257 (57%) responded to the survey, of which 110 make treatment re-commendations to parents. Neonatologists were least likely to recommend surgery. Physicians who recommend surgery recommend procedures performed at their own institution over those performed elsewhere (odds ratio, 2.80; 95% confidence interval, 2.24-3.51). Twenty-six percent of physicians do not discuss nonsurgical management, and 25% of those at centers that do not perform cardiac transplantation do not discuss this option. The recommendations physicians make to parents are poorly associated with their predictions of postoperative outcomes.Conclusions: Physician recommendations to parents are poorly associated with their estimates of outcomes, and some physicians recommend the treatment preferred at their own institution over other options even when they predict better outcomes from another approach. Further, many physicians do not disclose all reasonable management options to parents of infants with HLHS. These findings raise doubts as to whether parents are given adequate information to make truly informed decisions.