Parents' Preferences Regarding Public Reporting of Outcomes in Congenital Heart Surgery
Parents' Preferences Regarding Public Reporting of Outcomes in Congenital Heart Surgery
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DOI：
10.1016/j.athoracsur.2017.05.043
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发表时间：
2018-02-01
影响因子：
4.6
通讯作者：
Jacobs, Marshall L.
中科院分区：
文献类型：
--
作者：
Irons, Mallory L.;Gaynor, J. William;Jacobs, Marshall L.
背景。要求公开报告先天性心脏病手术结果的呼吁催生了几种不同的报告方案，包括星级评级系统和基准程序特定死亡率数据表。关于先天性心脏病手术结果公开报告的最佳格式和内容，仍然存在重要的未解答问题。方法。我们与三个家长倡导团体合作，制定了一份调查问卷，以评估家长对“最佳”公共报告计划的格式和内容的态度。通过家长倡导团体成员的电子邮件名单以及2007年1月1日之后在费城儿童医院接受胸外科医生协会STS基准程序的家长队列，征求家长的参与。 结果。收到的 1,297 份回复提供了用于分析的完整数据。几乎所有参与者都是患有先天性心脏病儿童的母亲，其中大多数是白人。大约一半的儿童在产前得到诊断，63%的儿童在新生儿期接受了缺陷的初步修复。家长认为生存统计数据、外科医生的具体经验和并发症发生率是最重要的。在三种死亡率显示格式中，大多数家长 (89%) 认为基于数字程序的方法是最佳格式，超过一半的家长认为医院星级评定系统是最差的格式。结论。先天性心脏病儿童的父母将生存统计数据、外科医生的具体经验和并发症发生率视为需要公开报告的最重要的结果指标。此外，家长更喜欢使用基于数字程序的方法以特定于程序的格式呈现死亡率数据，而不是星级评级系统。 (C) 2018 年胸外科医师协会
Background. Calls for public reporting of outcomes in congenital heart surgery have led to several different reporting schemes, including a star rating system and benchmark procedure-specific mortality data tables. Important unanswered questions remain about the optimal format and content of public reporting of congenital heart surgery outcomes.Methods. In conjunction with three parent advocacy groups, we developed a questionnaire to gauge parents' attitudes regarding the format and content of an "optimal" public reporting scheme. Parents were solicited for participation through email lists of members of parent advocacy groups and from a cohort of parents whose children had undergone an STS benchmark procedure of the Society of Thoracic Surgeons at the Children's Hospital of Philadelphia after January 1, 2007.Results. The 1,297 responses received provided complete data for analysis. Nearly all the participants were mothers of children with congenital heart disease, and most were white. About half of the children were diagnosed prenatally, and 63% underwent initial repair of the defect in the neonatal period. Parents identified survival statistics, surgeon-specific experience, and complication rates as most important. Presented with three display formats for mortality rates, most parents (89%) identified a numeric procedure-based approach as the best format, and more than half identified the hospital star rating system as the worst format.Conclusions. Parents of children with congenital heart disease identify survival statistics, surgeon-specific experience, and complication rates as the most important outcome measures to report publicly. Additionally, parents preferred mortality data to be presented in a procedure-specific format using a numeric procedure-based approach, as opposed to the star rating system. (C) 2018 by The Society of Thoracic Surgeons