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围产期姑息治疗在胎儿神经学中的作用。

The Role of Perinatal Palliative Care in Fetal Neurology.

作者信息

Rent Sharla, Lemmon Monica E, Ellestad Sarah, Bidegain Margarita

机构信息

Division of Neonatology, Department of Pediatrics, Duke University School of Medicine, Durham, North Carolina.

Department of Population Health Sciences, Duke University School of Medicine, Durham, North Carolina.

出版信息

Am J Perinatol. 2023 Sep;40(12):1265-1271. doi: 10.1055/a-1682-2798. Epub 2021 Oct 28.

Abstract

OBJECTIVES

Many serious or life-threatening neurologic conditions are first diagnosed during the fetal period, often following a routine ultrasound or sonographic evaluation after an abnormal aneuploidy screen. Such conditions represent a worrisome or unexpected finding for expectant parents, making the perinatal period a critical time point to engage and empower families encountering complex neurologic clinical scenarios. This review covers the role of perinatal palliative care in these settings.

STUDY DESIGN

This study is a topical review RESULTS:  The prenatal identification of structural abnormalities of the brain or spinal cord, radiographic signs of hemorrhage or ischemic injury, or evidence of genetic or metabolic conditions should prompt involvement of a fetal palliative care team. The inherent prognostic uncertainty is challenging for prenatally diagnosed neurologic conditions which have difficult to predict short and long-term outcomes. While many of these conditions lead to the birth of an infant with neurodevelopmental challenges, few result in in utero demise. Palliative care beginning in the perinatal period provides an additional layer of support for families navigating complex decision-making during their pregnancy and provides continuity of care into the newborn period. Palliative care principles can help guide discussions around genetic and other diagnostic testing, fetal surgery, and birth planning. A multidisciplinary team can help support families with decision-making and through bereavement care in the setting of fetal or neonatal death.

CONCLUSION

Early palliative care team involvement can provide a more holistic approach to counseling, facilitate planning, and ensure that a family's goals and wishes are acknowledged throughout an infant's care trajectory.

KEY POINTS

· Many serious or life-threatening neurologic conditions are diagnosed during the fetal period.. · Palliative care principles should be incorporated in the fetal period for affected patients.. · Palliative care clinicians can aid parents and clinicians in shared decision-making.. · Palliative care principles should be employed by all care providers in relevant cases..

摘要

目的

许多严重或危及生命的神经系统疾病在胎儿期首次被诊断出来,通常是在异常非整倍体筛查后进行常规超声或超声检查评估时发现的。这些疾病对于准父母来说是一个令人担忧或意外的发现,使得围产期成为与面临复杂神经系统临床情况的家庭接触并赋予他们能力的关键时间点。本综述涵盖围产期姑息治疗在这些情况下的作用。

研究设计

本研究是一项专题综述。

结果

产前发现脑或脊髓结构异常、出血或缺血性损伤的影像学迹象,或遗传或代谢疾病的证据,应促使胎儿姑息治疗团队介入。对于产前诊断的神经系统疾病,其固有的预后不确定性具有挑战性,因为这些疾病的短期和长期结果难以预测。虽然其中许多疾病会导致出生的婴儿面临神经发育挑战,但很少会导致子宫内死亡。围产期开始的姑息治疗为家庭在怀孕期间进行复杂决策提供了额外的支持,并为新生儿期提供了持续护理。姑息治疗原则有助于指导围绕基因和其他诊断测试、胎儿手术和分娩计划的讨论。多学科团队可以帮助支持家庭进行决策,并在胎儿或新生儿死亡的情况下提供哀伤护理。

结论

早期姑息治疗团队的介入可以提供更全面的咨询方法,促进规划,并确保在婴儿的整个护理过程中认可家庭的目标和愿望。

关键点

· 许多严重或危及生命的神经系统疾病在胎儿期被诊断出来。· 对于受影响的患者,应在胎儿期纳入姑息治疗原则。· 姑息治疗临床医生可以帮助父母和临床医生进行共同决策。· 在相关病例中,所有护理提供者都应采用姑息治疗原则。

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本文引用的文献

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Of Tragedies and Miracles - Neonatal Organ Donation.《悲剧与奇迹——新生儿器官捐献》
N Engl J Med. 2018 Nov 29;379(22):2089-2091. doi: 10.1056/NEJMp1809147.
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Whole Exome Sequencing: Applications in Prenatal Genetics.全外显子组测序:在产前遗传学中的应用。
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