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约旦的弥漫性脑桥胶质瘤以及向患儿父母和家庭提前披露预后的影响。

Diffuse pontine glioma in Jordan and impact of up-front prognosis disclosure with parents and families.

作者信息

Qaddoumi Ibrahim, Ezam Najeeb, Swaidan Maisa, Jaradat Imad, Mansour Asem, Abuirmeileh Najyah, Bouffet Eric, Al-Hussaini Maysa

机构信息

Department of Paediatrics, King Hussein Cancer Centre, Amman 11941, Jordan.

出版信息

J Child Neurol. 2009 Apr;24(4):460-5. doi: 10.1177/0883073808325650. Epub 2008 Dec 10.

DOI:10.1177/0883073808325650
PMID:19074045
Abstract

For patients with diffuse pontine glioma, our institution offers local radiotherapy and supportive care only. The prognosis and do-not-resuscitate orders are discussed upfront with patients' parents. To investigate the effectiveness of this policy, we retrospectively reviewed records of patients with diffuse pontine glioma treated at the institution over a 49-month period. This study included 19 children (16 girls and 3 boys). The median age at diagnosis was 7 years. One patient remained alive at the end of the study, 2 were lost to follow-up, and 16 were confirmed dead. The median survival was 8.2 months. Do-not-resuscitate discussion was documented for 14 patients and successfully initiated for 11. None of those confirmed dead had been offered life support. Contrary to the common belief, our study showed that do not resuscitate should be addressed in Muslim patients with high-risk malignancies. We also found that diffuse pontine glioma warrants further study in developing countries.

摘要

对于弥漫性脑桥胶质瘤患者,我们机构仅提供局部放疗和支持性护理。预后和不进行心肺复苏医嘱会提前与患者父母进行讨论。为了研究该政策的有效性,我们回顾性分析了本机构在49个月期间治疗的弥漫性脑桥胶质瘤患者的记录。本研究纳入了19名儿童(16名女孩和3名男孩)。诊断时的中位年龄为7岁。研究结束时1名患者仍存活,2名失访,16名被证实死亡。中位生存期为8.2个月。有14名患者记录了不进行心肺复苏的讨论,其中11名成功启动。所有被证实死亡的患者均未接受生命支持。与普遍看法相反,我们的研究表明,对于患有高危恶性肿瘤的穆斯林患者,应讨论不进行心肺复苏的问题。我们还发现,弥漫性脑桥胶质瘤在发展中国家值得进一步研究。

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