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心室辅助装置支持的儿科患者的临终关怀:一项网络数据库队列研究。

End-of-Life in Pediatric Patients Supported by Ventricular Assist Devices: A Network Database Cohort Study.

作者信息

Hollander Seth A, Pyke-Grimm Kimberly A, Shezad Muhammad F, Zafar Farhan, Cousino Melissa K, Feudtner Chris, Char Danton S

机构信息

Department of Pediatrics (Cardiology), Stanford University, Palo Alto, CA.

Departments of Pediatrics (Hematology/Oncology), and Nursing Research and Evidence-Based Practice, Stanford University, Palo Alto, CA.

出版信息

Pediatr Crit Care Med. 2023 Jan 1;24(1):41-50. doi: 10.1097/PCC.0000000000003115. Epub 2022 Nov 16.

DOI:10.1097/PCC.0000000000003115
PMID:36398973
Abstract

OBJECTIVES

Most pediatric patients on ventricular assist device (VAD) survive to transplantation. Approximately 15% will die on VAD support, and the circumstances at the end-of-life are not well understood. We, therefore, sought to characterize patient location and invasive interventions used at the time of death.

DESIGN

Retrospective database study of a cohort meeting inclusion criteria.

SETTING

Thirty-six centers participating in the Advanced Cardiac Therapies Improving Outcomes Network (ACTION) Registry.

PATIENTS

Children who died on VAD therapy in the period March 2012 to September 2021.

INTERVENTIONS

None.

MEASUREMENTS AND MAIN RESULTS

Of the 117 of 721 patients (16%) who died on VAD, the median (interquartile range) age was 5 years (1-16 yr) at 43 days (17-91 d) postimplant. Initial goals of therapy were bridge to consideration for candidacy for transplantation in 60 of 117 (51%), bridge to transplantation in 44 of 117 (38%), bridge to recovery 11 of 117 (9%), or destination therapy (i.e., VAD as the endpoint) in two of 117 (2%). The most common cause of death was multiple organ failure in 35 of 117 (30%), followed by infection in 12 of 117 (10%). Eighty-five of 92 (92%) died with a functioning device in place. Most patients were receiving invasive interventions (mechanical ventilation, vasoactive infusions, etc.) at the end of life. Twelve patients (10%) died at home.

CONCLUSIONS

One-in-six pediatric VAD patients die while receiving device support, with death occurring soon after implant and usually from noncardiac causes. Aggressive interventions are common at the end-of-life. The ACTION Registry data should inform future practices to promote informed patient/family and clinician decision-making to hopefully reduce suffering at the end-of-life.

摘要

目的

大多数接受心室辅助装置(VAD)治疗的儿科患者能存活至接受移植。约15%的患者会在VAD支持下死亡,而临终时的具体情况尚不清楚。因此,我们试图描述患者死亡时的位置以及所采用的侵入性干预措施。

设计

对符合纳入标准的队列进行回顾性数据库研究。

地点

36个参与高级心脏治疗改善结局网络(ACTION)注册研究的中心。

患者

2012年3月至2021年9月期间在VAD治疗中死亡的儿童。

干预措施

无。

测量指标及主要结果

在721例患者中有117例(16%)在VAD治疗期间死亡,植入后43天(17 - 91天)时的中位(四分位间距)年龄为5岁(1 - 16岁)。治疗的初始目标是作为移植候选资格考虑的过渡(117例中有60例,51%)、移植过渡(117例中有44例,38%)、恢复过渡(117例中有11例,9%)或目标治疗(即VAD作为终点,117例中有2例,2%)。最常见的死亡原因是多器官功能衰竭,117例中有35例(30%),其次是感染,117例中有12例(10%)。92例中有85例(92%)在装置正常运行时死亡。大多数患者在临终时接受了侵入性干预措施(机械通气、血管活性药物输注等)。12例患者(10%)在家中死亡。

结论

六分之一的儿科VAD患者在接受装置支持时死亡,死亡多发生在植入后不久,且通常由非心脏原因导致。临终时积极干预措施很常见。ACTION注册研究的数据应为未来的实践提供参考,以促进患者/家属和临床医生做出明智的决策,有望减少临终时的痛苦。

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