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电子患者报告结局测量(e-PROMs)在儿科姑息肿瘤治疗中的应用:综述。

Electronic Patient Reported Outcomes Measures (e-PROMs) in Pediatric Palliative Oncology Care: A Scoping Review.

机构信息

Urologic Oncology Unit, Fondazione IRCCS Istituto Nazionale dei Tumori, Milan, Italy.

High-Complexity Unit of Palliative Care, Pain Therapy and Rehabilitation, Fondazione IRCCS Istituto Nazionale dei Tumori, Milan, Italy.

出版信息

J Palliat Care. 2024 Oct;39(4):298-315. doi: 10.1177/08258597241274027. Epub 2024 Sep 19.

Abstract

Research findings regarding child-centered care and electronic patient reported outcome measures (e-PROMs) within pediatric palliative oncology care reveal an intricate field of study. This study aimed to map innovations in e-PROMs for the pediatric cancer population in palliative care and their impact on symptom management, and communication with healthcare professionals. A scoping review was designed following the Arksey and O'Malley framework. Literature searches were conducted in CINAHL, Embase, MEDLINE, PsycINFO, SCOPUS, and Web of Science. Inclusion criteria targeted children aged 0-18 years with cancer, receiving palliative and/or end-of-life care, and using e-PROMs. Twelve articles were included: 10 quantitative studies, one qualitative study, and one mixed-method study. A narrative synthesis approach was used to summarize the findings, categorized into three sections: (a) technological innovation of e-PROMs in pediatric palliative oncology care; (b) the impact of e-PROMs on symptom monitoring, management, and children's care; (c) the effects of e-PROMs on communication between children and healthcare professionals in pediatric palliative oncology care. e-PROMs have proven effective in empowering children to express their perspectives and actively engage in their end-of-life care. Due to flexible software and devices designed for various age groups, these tools fit seamlessly into children's daily routines and preferences, including the use of play-oriented applications. They facilitate a deeper understanding, and management of physical and emotional symptoms while ensuring care remains child-centered. This emphasizes the importance of preserving the essence of childhood and addressing the unique needs and experiences of young patients in pediatric palliative oncology care.

摘要

有关儿童为中心的关怀和电子患者报告结局测量(e-PROMs)在儿科姑息肿瘤学护理中的研究结果揭示了一个复杂的研究领域。本研究旨在绘制姑息治疗中儿科癌症患者的 e-PROM 创新及其对症状管理和与医疗保健专业人员沟通的影响图。本研究采用 Arksey 和 O'Malley 框架设计了范围综述。文献检索在 CINAHL、Embase、MEDLINE、PsycINFO、SCOPUS 和 Web of Science 中进行。纳入标准针对年龄在 0-18 岁的癌症患儿,接受姑息和/或临终关怀,并使用 e-PROMs。共纳入 12 篇文章:10 篇定量研究、1 篇定性研究和 1 篇混合方法研究。采用叙述性综合方法总结研究结果,分为三个部分:(a)儿科姑息肿瘤学护理中 e-PROMs 的技术创新;(b)e-PROMs 对症状监测、管理和儿童护理的影响;(c)e-PROMs 对儿科姑息肿瘤学护理中儿童与医疗保健专业人员之间沟通的影响。e-PROMs 已被证明在增强儿童表达观点和积极参与临终关怀方面非常有效。由于为各种年龄组设计了灵活的软件和设备,这些工具可以无缝融入儿童的日常生活和偏好中,包括使用以游戏为导向的应用程序。它们促进了对身体和情感症状的更深入理解和管理,同时确保关怀仍然以儿童为中心。这强调了在儿科姑息肿瘤学护理中保留童年本质和解决年轻患者独特需求和体验的重要性。

https://cdn.ncbi.nlm.nih.gov/pmc/blobs/c106/11504155/8bc0c0dfa1b9/10.1177_08258597241274027-fig1.jpg

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