Routine use of patient-reported experience and outcome measures for children and young people: a scoping review.

Background: Patient-reported outcome measures (PROMs) measure people's views of their health status whereas patient-reported experience measures (PREMs) are questionnaires measuring perceptions of their experience whilst receiving healthcare. PROMs/PREMs have the potential to enable children and young people (CYP) to be involved in decisions about their care and improve the quality of their care but it is not clear how often PROMs/PREMs are incorporated as part of standard care of CYP in the hospital setting. The aims of this scoping review were to understand the extent of the literature and map available evidence on the use, benefits, barriers and facilitators of PROMs/PREMs as part of standard care and treatment of CYP in hospitals.

Methods: The Joanna Briggs Institute review process was used to map existing evidence on the use of PROMs/PREMs in routine care of CYP in different hospital settings worldwide. Key search terms were developed and Ovid (Emcare, Embase MEDLINE, APA PsychInfo), Scopus and Web of Science were searched. Data were analysed using frequency counts and basic content analysis for thematic mapping according to the research questions. We undertook an initial search in February 2021 and updated this in April 2023.

Results: The search yielded 68,004 studies, 388 were eligible for full text review and 172 met the inclusion criteria. PROMs were more commonly used than PREMs in routine care of CYP in hospitals; these were mostly collected using electronic collection and concentrated in specific specialities, settings, contexts and countries. The findings mapped the use of PROMs/PREMs, including how data are applied in clinical practice and used for service development, but this was not consistently reported. There are specific challenges in the implementation of PROMs/PREMs in routine care of CYP that need to be considered.

Conclusion: PROMs/PREMs have the potential to improve care for CYP in hospital settings contributing to different aspects of care. A better understanding of their use, how results can be applied in clinical practice and contribute to service development will enable meaningful employment. The popularity of electronically collected and captured PROMS/PREMs warrants further investigation to enable their meaningful use in routine care of CYP.

Systematic Review Registration: Not pre-registered.