{"title":"Electronic Patient Reported Outcomes Measures (e-PROMs) in Pediatric Palliative Oncology Care: A Scoping Review.","authors":"Daniele Rusconi,Ilaria Basile,Flavia Rampichini,Stella Colombo,Laura Arba,Maria Luisa Pancheri,Letteria Consolo,Maura Lusignani","doi":"10.1177/08258597241274027","DOIUrl":null,"url":null,"abstract":"Objective: 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. Methods: 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. Results: 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. Conclusion: 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.","PeriodicalId":51096,"journal":{"name":"Journal of Palliative Care","volume":"36 1","pages":"8258597241274027"},"PeriodicalIF":1.3000,"publicationDate":"2024-09-19","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":"0","resultStr":null,"platform":"Semanticscholar","paperid":null,"PeriodicalName":"Journal of Palliative Care","FirstCategoryId":"3","ListUrlMain":"https://doi.org/10.1177/08258597241274027","RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":null,"EPubDate":"","PubModel":"","JCR":"Q4","JCRName":"HEALTH CARE SCIENCES & SERVICES","Score":null,"Total":0}
引用次数: 0
Abstract
Objective: 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. Methods: 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. Results: 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. Conclusion: 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.
目的:有关儿科肿瘤姑息治疗中以儿童为中心的护理和电子患者报告结果测量(e-PROMs)的研究成果揭示了一个错综复杂的研究领域。本研究旨在绘制姑息治疗中儿科癌症患者的电子患者报告结果(e-PROMs)创新图,以及它们对症状管理和与医护人员沟通的影响。研究方法按照Arksey和O'Malley框架设计了一个范围界定综述。在 CINAHL、Embase、MEDLINE、PsycINFO、SCOPUS 和 Web of Science 中进行了文献检索。纳入标准为:0-18 岁癌症患儿、接受姑息治疗和/或临终关怀的患儿、使用电子病历管理系统的患儿。结果: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。研究采用叙事综合法对研究结果进行总结,总结分为三个部分:(a)电子口述记录程序在儿科姑息肿瘤护理中的技术创新;(b)电子口述记录程序对症状监测、管理和儿童护理的影响;(c)电子口述记录程序对儿科姑息肿瘤护理中儿童与医护人员沟通的影响。结论:事实证明,电子口述记录仪能有效增强儿童表达自己观点的能力,并积极参与临终关怀。由于软件和设备设计灵活,适用于不同年龄段的儿童,这些工具可以完美地融入儿童的日常生活和喜好,包括使用以游戏为导向的应用程序。它们有助于加深对身体和情绪症状的理解和管理,同时确保护理工作始终以儿童为中心。这强调了在儿科姑息肿瘤治疗中保留童年本质、满足年幼患者独特需求和体验的重要性。
期刊介绍:
The Journal of Palliative Care is a quarterly, peer-reviewed, international and interdisciplinary forum for practical, critical thought on palliative care and palliative medicine. JPC publishes high-quality original research, opinion papers/commentaries, narrative and humanities works, case reports/case series, and reports on international activities and comparative palliative care.