McCracken Jennifer, Wheelwright Sally, Hon YiWen, Shaw Clare
Richard Wells Rehabilitation Centre, The Royal Marsden NHS Foundation Trust, Sutton, UK.
Sussex Health Outcomes Research & Education in Cancer (SHORE-C), University of Sussex, Falmer, UK.
J Hum Nutr Diet. 2023 Apr;36(2):453-467. doi: 10.1111/jhn.13104. Epub 2022 Nov 3.
The present study aims to summarise current knowledge and identify gaps in knowledge and research regarding experience, decision-making and information needs around parenteral nutrition, among people with advanced cancer, and their carers.
This review was informed by previous methods and guidance on conducting and reporting scoping reviews. A literature search was conducted in March 2021 using Embase, Medline, CINAHL, Google and Web of Science to identify studies that examined the experience, decision-making process and information needs of adults with advanced cancer, and their carers, who were making decisions around commencing and discontinuing parenteral nutrition. There were no date limitations, although only papers published in English were included.
Of the 588 papers identified, 12 papers, all qualitative, met the eligibility criteria. Despite the reported negative aspects of home parenteral nutrition, patients and carers felt the benefits outweighed these. There was variability in whether patients and carers felt involved in decisions around commencing parenteral nutrition. No studies specifically addressed information needs.
Research is required to explore the information that patients with advanced cancer, and their carers, need to facilitate their decision-making around commencing and discontinuing parenteral nutrition. We recommend the development of processes for obtaining written informed consent from patients commencing parenteral nutrition to ensure that core topics are discussed on initiation, enabling patients and carers to make informed decisions. Additionally, we recommend development of a national framework to inform patients and carers of the whole discharge process on PN from decision-making to discontinuing PN.
本研究旨在总结当前关于晚期癌症患者及其护理人员在肠外营养方面的经验、决策和信息需求的知识，并找出知识和研究方面的差距。
本综述参考了先前关于进行和报告范围综述的方法和指南。2021年3月，使用Embase、Medline、CINAHL、谷歌和科学网进行文献检索，以确定研究晚期癌症成人患者及其护理人员在开始和停止肠外营养决策时的经验、决策过程和信息需求的研究。尽管仅纳入英文发表的论文，但没有日期限制。
在识别出的588篇论文中，有12篇均为定性研究的论文符合纳入标准。尽管有报道称家庭肠外营养存在负面情况，但患者和护理人员认为其益处大于这些负面情况。患者和护理人员在开始肠外营养决策时是否感到参与其中存在差异。没有研究专门涉及信息需求。
需要开展研究，以探索晚期癌症患者及其护理人员在开始和停止肠外营养决策时所需的信息。我们建议制定流程，以便从开始接受肠外营养的患者处获得书面知情同意，确保在开始时讨论核心主题，使患者和护理人员能够做出明智的决策。此外，我们建议制定一个国家框架，告知患者和护理人员关于肠外营养从决策到停止的整个出院过程。
