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Survival outcome in severe left-sided congenital diaphragmatic hernia with and without fetal endoscopic tracheal occlusion in a country with suboptimal neonatal management.在新生儿管理水平欠佳的国家中,采用和不采用胎儿内镜气管阻塞技术治疗严重左侧先天性膈疝的患儿生存结局。
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Postnatal care setting and survival after fetoscopic tracheal occlusion for severe congenital diaphragmatic hernia: A systematic review and meta-analysis.胎儿镜气管封堵术治疗严重先天性膈疝的产后护理环境与生存:系统评价和荟萃分析。
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Congenital diaphragmatic hernia.先天性膈疝。
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本文引用的文献

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Prenatal treatment of severe congenital diaphragmatic hernia: there is still medical equipoise.严重先天性膈疝的产前治疗:仍存在医学上的权衡。
Ultrasound Obstet Gynecol. 2020 Oct;56(4):493-497. doi: 10.1002/uog.22182.
2
Should we offer fetal surgery for severe congenital diaphragmatic hernia or bring these cases to trial? Difference between chance and hazard.我们应该为严重先天性膈疝提供胎儿手术,还是将这些病例进行试验?机遇与风险的差异。
Ultrasound Obstet Gynecol. 2020 Oct;56(4):491-492. doi: 10.1002/uog.22103.
3
Prenatal diagnosis and management of congenital diaphragmatic hernia.先天性膈疝的产前诊断与处理。
Best Pract Res Clin Obstet Gynaecol. 2019 Jul;58:93-106. doi: 10.1016/j.bpobgyn.2018.12.010. Epub 2019 Jan 5.
4
Maternal complications following open and fetoscopic fetal surgery: A systematic review and meta-analysis.母体并发症在开放性胎儿手术和经阴道胎儿手术后:一项系统评价和荟萃分析。
Prenat Diagn. 2019 Mar;39(4):251-268. doi: 10.1002/pd.5421. Epub 2019 Feb 27.
5
Compassionate use of gene therapies in pediatrics: An ethical analysis.儿科基因治疗的伦理分析。
Semin Perinatol. 2018 Dec;42(8):508-514. doi: 10.1053/j.semperi.2018.09.010. Epub 2018 Oct 2.
6
Proposal for standardized prenatal ultrasound assessment of the fetus with congenital diaphragmatic hernia by the European reference network on rare inherited and congenital anomalies (ERNICA).先天性膈疝胎儿产前超声评估的标准化建议,由罕见遗传性和先天性异常欧洲参考网络(ERNICA)提出。
Prenat Diagn. 2018 Aug;38(9):629-637. doi: 10.1002/pd.5297. Epub 2018 Jul 23.
7
Prenatally versus postnatally diagnosed congenital diaphragmatic hernia - Side, stage, and outcome.产前与产后诊断的先天性膈疝——患侧、分期及预后
J Pediatr Surg. 2019 Apr;54(4):651-655. doi: 10.1016/j.jpedsurg.2018.04.008. Epub 2018 Apr 14.
8
External validity in perinatal research.围生期研究的外部有效性。
Acta Obstet Gynecol Scand. 2018 Apr;97(4):424-428. doi: 10.1111/aogs.13268. Epub 2017 Dec 18.
9
Current and future antenatal management of isolated congenital diaphragmatic hernia.孤立性先天性膈疝的当前和未来产前管理。
Semin Fetal Neonatal Med. 2017 Dec;22(6):383-390. doi: 10.1016/j.siny.2017.11.002. Epub 2017 Nov 21.
10
Diabetes and Diabetic Retinopathy: Knowledge, Attitude, Practice (KAP) among Diabetic Patients in A Tertiary Eye Care Centre.糖尿病与糖尿病视网膜病变:三级眼科护理中心糖尿病患者的知识、态度、行为(KAP)
J Clin Diagn Res. 2017 Jul;11(7):NC01-NC07. doi: 10.7860/JCDR/2017/27027.10174. Epub 2017 Jul 1.

TOTAL 试验困境:一项关于胎儿治疗严重先天性膈疝的均衡性的专业人员调查。

The TOTAL trial dilemma: A survey among professionals on equipoise regarding fetal therapy for severe congenital diaphragmatic hernia.

机构信息

Department of Development and Regeneration cluster Woman and Child, Biomedical Sciences, KU Leuven, Leuven, Belgium.

Centre for Biomedical Ethics and Law, KU Leuven, Leuven, Belgium.

出版信息

Prenat Diagn. 2021 Jan;41(2):179-189. doi: 10.1002/pd.5849. Epub 2020 Nov 5.

DOI:10.1002/pd.5849
PMID:33074552
原文链接:https://pmc.ncbi.nlm.nih.gov/articles/PMC7613473/
Abstract

OBJECTIVE

Running randomized clinical trials (RCT) in fetal therapy is challenging. This is no different for fetoscopic endoluminal tracheal occlusion (FETO) for severe left-sided Congenital Diaphragmatic Hernia (CDH). We assessed the knowledge, attitude and practice (KAP) of maternal-fetal medicine specialists toward the antenatal management of CDH, and the randomized controlled clinical (RCT) "Tracheal Occlusion To Accelerate Lung growth-trial."

METHODS

A cross-sectional KAP-survey was conducted among 311 registrants of the 18th World Congress in Fetal Medicine.

RESULTS

The overall knowledge of CDH and FETO was high. Remarkably only 45% considers prenatal prediction of neonatal outcome reliable. Despite, in their clinical practice they perform severity assessment (80%) and refer families for FETO either within the context of an RCT (43%) or on patient request (32%). Seventy percent perceives not offering FETO on patient demand seems as if no treatment is provided to a fetus with predicted poor outcome. Only 20% of respondents considers denying access to FETO on patient demand not as a psychological burden.

CONCLUSION

Often the views of individual respondents contradicted with their clinical practice. It seems that, for severe CDH, clinicians face personal and practical dilemmas that undermine equipoise. To us, this indicates the tension between the clinical and scientific obligations physicians experience.

摘要

目的

在胎儿治疗中进行随机临床试验(RCT)具有挑战性。对于严重左侧先天性膈疝(CDH)的胎儿内窥镜腔内气管阻塞(FETO)也是如此。我们评估了母胎医学专家对 CDH 产前管理的知识,态度和实践(KAP),以及随机对照临床试验(RCT)“气管阻塞加速肺生长试验”。

方法

在第 18 届胎儿医学世界大会的 311 名注册者中进行了横断面 KAP 调查。

结果

对 CDH 和 FETO 的总体认识水平较高。值得注意的是,只有 45%的人认为产前预测新生儿结局是可靠的。尽管如此,在他们的临床实践中,他们进行严重程度评估(80%),并根据 RCT(43%)或患者要求(32%)将家庭转介进行 FETO。70%的人认为,如果根据患者的要求不提供 FETO,就好像没有为预测预后不良的胎儿提供治疗。只有 20%的受访者认为拒绝根据患者的要求拒绝 FETO 不会带来心理负担。

结论

通常情况下,个别受访者的观点与他们的临床实践相矛盾。对于严重的 CDH,临床医生似乎面临着个人和实际的困境,从而破坏了平衡。对我们来说,这表明了医生所经历的临床和科学义务之间的紧张关系。

https://cdn.ncbi.nlm.nih.gov/pmc/blobs/ae39/7613473/1f506ca1a6cd/EMS152875-f003.jpg
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