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以患者为中心的围产期姑息治疗:不同队列中的家庭分娩计划、结局及资源利用情况

Patient-centered perinatal palliative care: family birth plans, outcomes, and resource utilization in a diverse cohort.

作者信息

Buskmiller Cara, Ho Stephanie, Chen Michelle, Gants Shavonia, Crowe Ellen, Lopez Suzanne

机构信息

Departments of Obstetrics, Gynecology and Reproductive Sciences (Drs Buskmiller and Ho, Ms Chen, Dr Gants, and Ms Crowe).

Departments of Obstetrics, Gynecology and Reproductive Sciences (Drs Buskmiller and Ho, Ms Chen, Dr Gants, and Ms Crowe).

出版信息

Am J Obstet Gynecol MFM. 2022 Nov;4(6):100725. doi: 10.1016/j.ajogmf.2022.100725. Epub 2022 Aug 19.

DOI:10.1016/j.ajogmf.2022.100725
PMID:35995365
Abstract

BACKGROUND

Perinatal palliative care is an emerging concept in fetal medicine that offers quality-of-life options and anticipatory grief management for families of fetuses with complex conditions. Few perinatal palliative care outcomes are detailed in peer-reviewed literature.

OBJECTIVE

This study aimed to describe outcomes of perinatal palliative care at the Fetal Center of the University of Texas Health Science Center at Houston and Women's Center at Children's Memorial Hermann Hospital.

STUDY DESIGN

This was a retrospective cohort of families receiving perinatal palliative care for life-limiting fetal diagnosis, such as trisomy 13 or 18 and some major structural anomalies between 2016 and 2020. The primary outcome was whether delivery events matched families' birth plans, including fetal/neonatal clinical course matching expectations described by consultant notes. Secondary outcomes included maternal safety outcomes, use of perinatal interventions, delivery outcomes, and resource utilization outcomes.

RESULTS

Of 187 perinatal palliative care consults, delivery events matched families' plans and clinicians' expectations in 89% of cases (165/185); 39% (73/187) of families requested some perinatal interventions, 64% of whom planned postnatal comfort care even while choosing antenatal interventions. Demographics and median income were similar between families who chose some interventions and those who chose comfort care. Patients choosing any interventions had more mismatches between their plans and delivery events (19% vs 2%; P<.001), were more likely to change their plans (24% vs 6%; P=.001), and unsurprisingly used more healthcare resources. They were also more likely to have intraamniotic infection or postpartum hemorrhage (9% vs 22%; P=.02), but this was associated with mode of delivery and not choice of interventions.

CONCLUSION

Most families' perinatal experiences matched birth plans and expectations in this perinatal palliative care program. Families who desired interventions used more healthcare resources, but often did so with plans for postnatal comfort care, demonstrating insight into neonatal prognosis but achieving value-consistent goals, such as meeting a live neonate. Perinatal palliative care was safe for maternal patients and equitable across racial, ethnic, and income groups. Perinatal palliative care and some perinatal interventions are options for care of the whole family in complex fetal medicine cases.

摘要

背景

围产期姑息治疗是胎儿医学中一个新兴的概念,为患有复杂疾病的胎儿家庭提供生活质量选择和预期悲伤管理。很少有围产期姑息治疗的结果在同行评审的文献中有详细描述。

目的

本研究旨在描述德克萨斯大学休斯顿健康科学中心胎儿中心和儿童纪念赫尔曼医院妇女中心的围产期姑息治疗结果。

研究设计

这是一项回顾性队列研究,研究对象为2016年至2020年间因胎儿诊断为致命性疾病(如13三体或18三体以及一些主要结构异常)而接受围产期姑息治疗的家庭。主要结局是分娩事件是否符合家庭的分娩计划,包括胎儿/新生儿临床过程是否符合会诊记录中描述的预期。次要结局包括孕产妇安全结局、围产期干预措施的使用、分娩结局和资源利用结局。

结果

在187例围产期姑息治疗会诊中,89%(165/185)的分娩事件符合家庭计划和临床医生的预期;39%(73/187)的家庭要求采取一些围产期干预措施,其中64%的家庭即使选择了产前干预措施,也计划在产后进行舒适护理。选择一些干预措施的家庭与选择舒适护理的家庭在人口统计学和收入中位数方面相似。选择任何干预措施的患者其计划与分娩事件之间的不匹配情况更多(19%对2%;P<0.001),更有可能改变计划(24%对6%;P=0.001),且不出所料地使用了更多医疗资源。他们也更有可能发生羊膜腔内感染或产后出血(9%对22%;P=0.02),但这与分娩方式有关,而非干预措施的选择。

结论

在这个围产期姑息治疗项目中,大多数家庭的围产期经历符合分娩计划和预期。希望采取干预措施的家庭使用了更多医疗资源,但通常这样做时也有产后舒适护理的计划,这表明他们对新生儿预后有深刻认识,但实现了价值一致的目标,如迎接一个存活的新生儿。围产期姑息治疗对孕产妇患者是安全的,并且在种族、民族和收入群体中是公平的。围产期姑息治疗和一些围产期干预措施是复杂胎儿医学病例中为整个家庭提供护理的选择。

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Specialist perinatal palliative care: a retrospective review of antenatal referrals to a children's palliative care service over 14 years.专科围产期舒缓治疗:对儿童舒缓治疗服务 14 年来的产前转介进行回顾性分析。
BMC Palliat Care. 2023 Nov 10;22(1):177. doi: 10.1186/s12904-023-01302-5.