Aims: There is increasing pressure to use patient-reported outcome (PRO) measures as part of the care provided to individual cancer patients. Yet, there is little consensus on the essential features or issues to be considered when developing real-world PRO systems. The aim of this study was to develop a comprehensive framework of key considerations and a roadmap to guide the development and implementation of such systems.
Methods: Peer-reviewed and grey literature relevant to policy makers, healthcare organisations and consumers was identified via a rapid review using PubMed and Google. These were combined with seminal works by recognised experts, and those identified via citation tracking activities. Essential features and issues were identified via a narrative synthesis of documents purposively selected as ‘exemplars’ in the field. Ad hoc searches were conducted on possible system strains. Implementation, clinical utility, and construct validity frameworks were used to support the explanation and elaboration of key features. Then, all findings were used to create a roadmap/logic model intended to support development and implementation activities.
Results: A total of 24 essential features mapping to 10 domains were identified from 34 key documents. Requisite inputs such as funding and genuine partnerships, and known system strains including lack of fit-for-purpose tools were also identified. The roadmap, which should be used in tandem with the comprehensive framework, lays out the logical sequence of activities to deliver the outputs needed to optimise the likelihood that PRO systems are acceptable to all stakeholders, appropriate for their stated purpose and clinical application, and feasible and sustainable.
Conclusions: Real-world PRO systems that have not achieved their intended purpose or experienced significant issues during implementation have typically overlooked or not given due consideration to features forming part of the comprehensive framework. The framework and roadmap can inform the design of proof-of-concept tests and larger implementation studies.