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新生儿动脉缺血性脑卒中的识别、鉴定和诊断宣告:基于父母生活体验的联合探索性定量和定性研究。

Recognition, identification, and diagnosis announcement of neonatal arterial ischemic stroke: A combined exploratory quantitative and qualitative study on parents' lived experiences.

机构信息

Pediatric Neurology Unit, Paediatric subspecialties Service, Geneva University Hospitals, Rue Willy-Donzé 6, 1211 Geneva 14, Switzerland.

CHU de Saint-Étienne, French Center for Paediatric Stroke, Inserm U1059, CIC1408, 42055 Saint-Étienne, France.

出版信息

Arch Pediatr. 2021 May;28(4):285-290. doi: 10.1016/j.arcped.2021.02.002. Epub 2021 Mar 11.

DOI:10.1016/j.arcped.2021.02.002
PMID:33715932
Abstract

OBJECTIVES

To examine the epidemiology of neonatal arterial ischemic stroke (NAIS) and the chronology of care from early reported manifestations to formal diagnosis obtained by imaging. To explore how parents experienced the sequence of events, their own perception of potential diagnostic delay, diagnosis announcement, and prognosis discussion, and their current view of their child's quality of life.

METHODS

We retrospectively analyzed data of all NAIS cases that have been treated in our institution. Quantitative data came from both newborns' and mothers' medical records. Qualitative data were collected from parents in semi-structured interviews based on a standardized questionnaire composed of open-ended questions.

RESULTS

A total of 14 neonates were treated for NAIS in our institution between January 2008 and December 2017. The incidence of NAIS during this period was one out of 4258 births. The majority of neonates presented within 48 hours with a mean of 27h after birth, most often in the form of repetitive focal clonus (13/14). The mean time before diagnosis consideration and confirmation was 5 and 33h, respectively. Late consideration of early reported symptoms was identified as the main source of delay. Despite good reported health outcome, NAIS was associated with significant acute and long-standing parental emotional stress.

CONCLUSION

Maternity hospital caregivers' awareness of NAIS is crucial to reach early diagnosis. Improving this aspect would not only allow better early management, but also make it possible to set up acute neuroprotective strategies. Clinicians should be attentive to the modalities of diagnosis and prognosis announcements, which are associated with considerable stress and misconceptions.

摘要

目的

研究新生儿动脉缺血性脑卒中(NAIS)的流行病学特征,以及从早期报告的临床表现到影像学确诊的治疗过程。探索父母如何经历这一系列事件,他们对潜在诊断延迟的自我认知、诊断告知和预后讨论,以及他们对孩子目前生活质量的看法。

方法

我们对我院收治的所有 NAIS 患儿进行了回顾性数据分析。定量数据来自新生儿和母亲的病历。定性数据来自对父母的半结构化访谈,访谈内容基于一份由开放式问题组成的标准化问卷。

结果

2008 年 1 月至 2017 年 12 月期间,我院共收治 14 例新生儿 NAIS。在此期间,NAIS 的发病率为每 4258 例活产儿中有 1 例。大多数新生儿在出生后 48 小时内出现症状,平均发病时间为出生后 27 小时,最常见的形式是反复局灶性抽搐(14 例中有 13 例)。考虑诊断和确诊的平均时间分别为 5 小时和 33 小时。早期报告症状的延迟考虑是导致延迟的主要原因。尽管患儿报告的健康状况良好,但 NAIS 仍与严重的急性和长期的父母情绪压力有关。

结论

产妇医院护理人员对 NAIS 的认识至关重要,这有助于实现早期诊断。提高这方面的认识不仅可以更好地进行早期治疗,还有可能建立急性神经保护策略。临床医生应注意诊断和预后告知的方式,这些方式会给患儿及其父母带来相当大的压力和误解。

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