Circumstances surrounding end-of-life in pediatric patients pre- and post-heart transplant: a report from the Pediatric Heart Transplant Society.
Circumstances surrounding end-of-life in pediatric patients pre- and post-heart transplant: a report from the Pediatric Heart Transplant Society.
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心脏病前后儿科患者的寿命末期：小儿心脏移植社会的报告。
DOI：
10.1111/petr.14196
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发表时间：
2022-03
影响因子：
1.3
通讯作者：
Schumacher, Kurt R.
中科院分区：
文献类型：
--
作者：
Cousino, Melissa K.;Yu, Sunkyung;Blume, Elizabeth D.;Henderson, Heather T.;Hollander, Seth A.;Khan, Sairah;Parent, John Jerry;Schumacher, Kurt R.
虽然儿童心脏移植的死亡率已经大大降低，但等待名单和移植后死亡率仍然值得注意。然而，针对这一人群的临终关怀研究非常有限。儿科心脏移植协会的这项研究旨在描述儿科心脏移植患者死亡的情况。对多机构、国际儿科心脏移植学会登记处进行了回顾性分析。进行了描述性统计和单变量分析，以1）描述儿科心脏移植前后患者的生命终末期，2）检查死亡位置和生命终末期技术干预与人口统计学和疾病因素之间的相关性。在1993年至2018年期间登记的9，217名患者（0-18岁）中，有2，804人（30%）死亡; 1，310人在等待心脏移植时，1，494人在心脏移植后。大多数等待名单死亡（89%）发生在医院，主要是在ICU（74%），大多数接受机械通气（77%）。在医院发生的移植后死亡较少（22%）。院外死亡与患者年龄较大相关（p<0.01）。ICU死亡与生命末期技术干预的高使用率是常见的，特别是在等待心脏移植的患者中。在这一高死亡率人群中，研究结果为临床医生、家庭和政策制定者提出了具有挑战性的考虑，即如何在医院死亡的高风险中平衡生活质量。
Although mortality has decreased considerably in pediatric heart transplantation, waitlist and post-transplant death rates remain notable. End-of-life focused research in this population, however, is very limited. This Pediatric Heart Transplant Society study aimed to describe the circumstances surrounding death of pediatric heart transplant patients. A retrospective analysis of the multi-institutional, international, Pediatric Heart Transplant Society registry was conducted. Descriptive statistics and univariate analyses were performed to 1) describe end-of-life in pediatric pre- and post-heart transplant patients and 2) examine associations between location of death and technological interventions at end-of-life with demographic and disease factors. Of 9,217 patients (0–18 years) enrolled in the registry between 1993–2018, 2,804 (30%) deaths occurred; 1,310 while awaiting heart transplant and 1,494 post-heart transplant. The majority of waitlist deaths (89%) occurred in the hospital, primarily in ICU (74%) with most receiving mechanical ventilation (77%). Fewer post-transplant deaths occurred in the hospital (22%). Out of hospital death was associated with older patient age (p<0.01). ICU deaths with high use of technological interventions at end of life were common, particularly in patients awaiting heart transplant. In this high mortality population, findings raise challenging considerations for clinicians, families, and policy makers on how to balance quality of life amidst high risk for hospital-based death.
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