A scoping review of the electronic collection and capture of patient reported outcome measures for children and young people in the hospital setting

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.Author summary: Patient reported outcome measures (PROMs) are questions that ask about a patient’s views on their health and health status, the use of PROMs as part of standard care can improve the quality of care. This scoping review maps the available evidence of the electronic systems used to collect and capture PROMs as part of the routine care of children and young people in the hospital setting. We performed a comprehensive literature search and identified 85 studies that matched our criteria for analysis. The use of electronic systems for the collection, storage and access of PROMs in routine care is popular but there are a variety of platforms available. This has led to different approaches to how the data has been collected, stored and accessed. This review highlights that it is important to consider the technical aspects of how the PROMs data collected can be accessed, shared and used across different platforms. This may help maximise the potential value of PROMs and promote further the adoption of PROMs as part of standard care in various care settings, ensuring that the patient voice is heard and represented.