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巴西儿科肿瘤患儿姑息治疗中医生的认知和障碍。

Physician Perceptions of and Barriers to Pediatric Palliative Care for Children With Cancer in Brazil.

机构信息

Department of Global Pediatric Medicine, St Jude Children's Research Hospital, Memphis, TN.

Division of Quality of Life and Palliative Care, Department of Oncology, St Jude Children's Research Hospital, Memphis, TN.

出版信息

JCO Glob Oncol. 2023 Aug;9:e2300057. doi: 10.1200/GO.23.00057.

DOI:10.1200/GO.23.00057
PMID:37535886
原文链接:https://pmc.ncbi.nlm.nih.gov/articles/PMC10581636/
Abstract

PURPOSE

Early integration of pediatric palliative care (PPC) for children with cancer is critical to improving the quality of life of both the patient and family. Understanding physician perceptions of palliative care and perceived barriers to early integration is necessary to develop PPC in Brazil.

METHODS

The Assessing Doctors' Attitudes on Palliative Treatment survey was modified for use in Brazil. The survey was open from January 2022 to June 2022 and distributed to physicians of all specialties from participating institutions who treat children with cancer. Statistical analysis was complemented by qualitative analysis of open-ended responses.

RESULTS

A total of 272 respondents participated. Most respondents reported access to PPC experts for consultation (77.2%) and 34.5% indicated previous palliative care training. Physician knowledge of PPC was generally aligned with WHO guidance (median alignment, 93.0%; range, 80.5%-98.2%). However, about half (53.3%) felt comfortable addressing physical needs of patients receiving PPC, 35.3% addressing emotional needs, 25.8% addressing spiritual needs, and 33.5% addressing grief and bereavement needs. Most respondents (65.4%) felt palliative care should be involved from diagnosis, but only 10.3% stated that this occurred in their setting. The most important barriers identified were physician discomfort (89.0%), limited physician knowledge (88.6%), and lack of home-based services (83.8%).

CONCLUSION

Despite a strong understanding of the role of palliative care, physicians in Brazil reported low confidence delivering PPC to children with cancer. Additionally, physicians generally believed that PPC should be integrated earlier in the disease trajectory of children with cancer. This work will direct educational and capacity building initiatives to ensure greater access to high-quality PPC for children with cancer in Brazil to address patient and family suffering.

摘要

目的

将儿童姑息治疗(PPC)尽早融入儿科对于提高患者及其家庭的生活质量至关重要。了解医生对姑息治疗的看法以及早期整合姑息治疗的障碍,对于在巴西开展 PPC 至关重要。

方法

对用于巴西的姑息治疗态度评估医生调查问卷进行了修改。该调查于 2022 年 1 月至 2022 年 6 月开放,分发给参与机构的所有治疗癌症儿童的专科医生。除了对开放式回答进行定性分析外,还进行了统计分析。

结果

共有 272 名受访者参与。大多数受访者表示可以咨询 PPC 专家(77.2%),34.5%的受访者表示接受过姑息治疗培训。医生对 PPC 的了解总体上与世界卫生组织的指导方针一致(中位数一致率为 93.0%;范围为 80.5%-98.2%)。然而,约一半(53.3%)的医生认为自己能够满足接受 PPC 的患者的身体需求,35.3%的医生能够满足患者的情绪需求,25.8%的医生能够满足患者的精神需求,33.5%的医生能够满足患者的悲伤和丧亲需求。大多数受访者(65.4%)认为姑息治疗应从诊断开始,但只有 10.3%的受访者表示这在他们的环境中发生。确定的最重要障碍是医生的不适(89.0%)、医生知识有限(88.6%)和缺乏家庭为基础的服务(83.8%)。

结论

尽管巴西的医生对姑息治疗的作用有深刻的理解,但他们报告称,在为癌症儿童提供姑息治疗方面信心不足。此外,医生普遍认为,应更早地将姑息治疗纳入癌症儿童的疾病进程。这项工作将指导教育和能力建设举措,以确保巴西更多癌症儿童能够获得高质量的姑息治疗,从而减轻患者及其家庭的痛苦。

https://cdn.ncbi.nlm.nih.gov/pmc/blobs/d32c/10581636/c24bed26ddc3/go-9-e2300057-g004.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/d32c/10581636/c24bed26ddc3/go-9-e2300057-g004.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/d32c/10581636/c24bed26ddc3/go-9-e2300057-g004.jpg

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2
Regional adaptation of the education in palliative and end-of-life Care Pediatrics (EPEC-Pediatrics) curriculum in Eurasia.在欧亚地区对姑息治疗和临终关怀儿科(EPEC-Pediatrics)课程进行区域性调整。
Cancer Med. 2023 Feb;12(3):3657-3669. doi: 10.1002/cam4.5213. Epub 2022 Sep 8.
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Physician Perceptions of Palliative Care for Children With Cancer in Latin America.
欧洲儿科癌症患者护理医生的认知:对姑息治疗的使用、时机及其早期整合障碍的见解。
Front Oncol. 2024 Oct 23;14:1461668. doi: 10.3389/fonc.2024.1461668. eCollection 2024.
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Is it early enough? The authentic meaning of the pediatric palliative approach between early and late referral in pediatric oncology: a case study.时机够早吗?儿科肿瘤学中早期转诊与晚期转诊之间儿科姑息治疗方法的真正意义:一项案例研究。
Front Oncol. 2024 Jul 25;14:1397983. doi: 10.3389/fonc.2024.1397983. eCollection 2024.
拉丁美洲儿科癌症患者姑息治疗的医师认知。
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