Alarilla Anne, Sebire Neil J, Keith Josh, Cortina-Borja Mario, Wray Jo, Davies Gwyneth
UCL Great Ormond Street Institute of Child Health, London, United Kingdom.
The Health Foundation, London, United Kingdom.
PLOS Digit Health. 2025 Jan 6;4(1):e0000704. doi: 10.1371/journal.pdig.0000704. eCollection 2025 Jan.
Patient reported outcome measures (PROMs) capture patients' views of their health status and the use of PROMs as part of standard care of children and young people has the potential to improve communication between patients/carers and clinicians and the quality of care. Electronic systems for the collection of or access to PROMs and integrating PROMs into electronic health records facilitates their implementation in routine care and could help maximise their value. Yet little is known about the technical aspects of implementation including the electronic systems available for collection and capture and how this may influence the value of PROMs in routine care which this scoping review aims to explore. The Joanna Briggs Institute review process was used. Seven databases were searched (Emcare, Embase MEDLINE, APA PsychInfo, Scopus and Web of Science), initially in February 2021 and updated in April 2023. Only studies that mentioned the use of electronic systems for the collection, storage and/or access of PROMs as part of standard care of children and young people in secondary (or tertiary) care settings were included. Data were analysed using frequency counts and thematically mapped using basic content analysis in relation to the research questions. From the 372 studies that were eligible for full text review, 85 studies met the inclusion criteria. The findings show that there is great variability in the electronic platforms used in the collection, storage and access of PROMs resulting in different configurations and fragmented approaches to implementation. There appears to be a lack of consideration on the technical aspects of the implementation such as the accessibility, useability and interoperability of the data collected. Electronic platforms for the collection and capture of PROMs in routine care of CYP is popular, yet, further understanding of the technical considerations in the use of electronic systems for implementation is needed to maximise the potential value and support the scalability of PROMs in routine care.
患者报告的结局指标（PROMs）反映了患者对自身健康状况的看法，将PROMs作为儿童和青少年标准护理的一部分，有可能改善患者/护理人员与临床医生之间的沟通以及护理质量。用于收集或获取PROMs并将其整合到电子健康记录中的电子系统有助于在常规护理中实施这些指标，并有助于最大化其价值。然而，对于实施的技术方面，包括可用于收集和获取的电子系统以及这可能如何影响PROMs在常规护理中的价值，人们知之甚少，本范围综述旨在探讨这一问题。采用了乔安娜·布里格斯研究所的综述流程。检索了七个数据库（Emcare、Embase、MEDLINE、APA PsychInfo、Scopus和Web of Science），最初在2021年2月进行检索，并于2023年4月更新。仅纳入了提及在二级（或三级）护理环境中将电子系统用于收集、存储和/或获取作为儿童和青少年标准护理一部分的PROMs的研究。使用频率计数对数据进行分析，并使用与研究问题相关的基本内容分析进行主题映射。在372项符合全文审查条件的研究中，有85项研究符合纳入标准。研究结果表明，在收集、存储和获取PROMs时所使用的电子平台存在很大差异，导致实施方式的不同配置和碎片化。对于实施的技术方面，如所收集数据的可访问性、可用性和互操作性，似乎缺乏考虑。在儿童和青少年常规护理中用于收集和获取PROMs的电子平台很受欢迎，然而，需要进一步了解在使用电子系统实施时的技术考量，以最大化PROMs在常规护理中的潜在价值并支持其可扩展性。
