将新生儿患者转诊至围产期姑息治疗的障碍：一项法国多中心调查。
Barriers in referring neonatal patients to perinatal palliative care: a French multicenter survey.
作者信息
Tosello Barthélémy, Dany Lionel, Bétrémieux Pierre, Le Coz Pierre, Auquier Pascal, Gire Catherine, Einaudi Marie-Ange
机构信息
Aix-Marseille University/EFS/CNRS, UMR 7268 ADÉS, Espace Éthique Méditerranéen, Hospital La Timone, 13005, Marseille, France; Assistance Publique-Hôpitaux de Marseille, Hospital Nord, Department of Neonatology, 13015, Marseille, France.
Aix-Marseille University, LPS EA 849, 13621, Aix-en-Provence, France; Assistance Publique-Hôpitaux de Marseille, Hospital La Timone, Department of Oncology, 13005, Marseille, France.
出版信息
PLoS One. 2015 May 15;10(5):e0126861. doi: 10.1371/journal.pone.0126861. eCollection 2015.
BACKGROUND
When an incurable fetal condition is detected, some women (or couples) would rather choose to continue with the pregnancy than opt for termination of pregnancy for medical reasons, which, in France, can be performed until full term. Such situations are frequently occurring and sometimes leading to the implementation of neonatal palliative care. The objectives of this study were to evaluate the practices of perinatal care french professionals in this context; to identify the potential obstacles that might interfere with the provision of an appropriate neonatal palliative care; and, from an opposite perspective, to determine the criteria that led, in some cases, to offer this type of care for prenatally diagnosed lethal abnormality.
METHODS
We used an email survey sent to 434 maternal-fetal medicine specialists (MFMs) and fetal care pediatric specialists (FCPs) at 48 multidisciplinary centers for prenatal diagnosis (MCPD).
RESULTS
Forty-two multidisciplinary centers for prenatal diagnosis (87.5%) took part. In total, 102 MFMs and 112 FCPs completed the survey, yielding response rate of 49.3%. One quarter of professionals (26.2%) estimated that over 20% of fetal pathologies presenting in MCPD could correspond to a diagnosis categorized as lethal (FCPs versus MFMs: 24% vs 17.2%, p = 0.04). The mean proportion of fetal abnormalities eligible for palliative care at birth was estimated at 19.30% (± 2.4) (FCPs versus MFMs: 23.4% vs 15.2%, p = 0.029). The degree of diagnostic certainty appears to be the most influencing factor (98.1%, n = 207) in the information provided to the pregnant woman with regard to potential neonatal palliative care. The vast majority of professionals, 92.5%, supported considering the practice of palliative care as a regular option to propose antenatally.
CONCLUSIONS
Our study reveals the clear need for training perinatal professionals in perinatal palliative care and for the standardization of practices in this field.
背景
当检测出胎儿患有无法治愈的疾病时，一些女性（或夫妇）宁愿选择继续妊娠，而不是出于医学原因选择终止妊娠，在法国，终止妊娠可在足月前进行。这种情况经常发生，有时会导致实施新生儿姑息治疗。本研究的目的是评估围产期护理法国专业人员在这种情况下的做法；确定可能干扰提供适当新生儿姑息治疗的潜在障碍；并且，从相反的角度，确定在某些情况下导致为产前诊断出的致命异常提供此类护理的标准。
方法
我们通过电子邮件调查向48个多学科产前诊断中心（MCPD）的434名母胎医学专家（MFM）和胎儿护理儿科专家（FCP）发送了调查问卷。
结果
42个多学科产前诊断中心（87.5%）参与了调查。总共有102名MFM和112名FCP完成了调查，回复率为49.3%。四分之一的专业人员（26.2%）估计，MCPD中出现的超过20%的胎儿疾病可能对应于分类为致命的诊断（FCP与MFM：24%对17.2%，p = 0.04）。出生时符合姑息治疗条件的胎儿异常的平均比例估计为19.30%（±2.4）（FCP与MFM：23.4%对15.2%，p = 0.029）。诊断确定性程度似乎是在向孕妇提供有关潜在新生儿姑息治疗的信息方面最具影响的因素（98.1%，n = 207）。绝大多数专业人员（92.5%）支持将姑息治疗实践视为产前常规提出的选择。
结论
我们的研究表明，围产期专业人员在围产期姑息治疗方面明显需要培训，并且该领域的实践需要标准化。
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