Adaptation of digital integration of PROMs and PREMs in oncology during implementation: a scoping review

Abstract

Purpose Digital tools facilitate the timely collection of patient-reported outcome and experience measures (ePROMs/PREMs), but there is no consistent reporting on the technical and content adaptations made essential to implementing these digital tools in a specific context. Adaptations made to ePROMs/ePREMs can improve data quality, clinical management, and patient outcomes. We explored how studies report on adaptations and the reasons and types of these during an implementation process of ePROMs/ePREMs systems in routine cancer care.

Methods We conducted a systematic scoping review. We searched PubMed, Embase, PsychINFO, and CINAHL (inception—May 5, 2023), using the Preferred Reporting Items for Systematic Reviews and Meta-Analyses extension for Scoping Reviews (PRISMA-ScR) checklist. Guided by the Population, Concept, and Context (PCC) framework, data were extracted and summarised in tables in four dimensions: context, content, evaluation, and training.

Results The systematic search found n = 5597 publications, and n = 20 were included (85% published since 2019). No studies reported on ePREMs. Various data collection methods and stakeholders were utilised to make adaptations, guided by one or more implementation frameworks (80% of studies). Common types of adaptations included changing context (e.g. complex onboarding), content (e.g. readability) (all studies), evaluation (e.g. alerts), and training (e.g. patients and clinicians). The use of an implementation framework did not affect the types of adaptations made.

Conclusions This review summarises the types of adaptations made to oncology ePROMs during implementation. To date, there has been no agreed system to capture adaptations of ePROMs in oncology, nor a system or framework to assess ePROMs efficacy.