Global use of electronic patient-reported outcome systems in nephrology: a mixed methods study

Abstract

ObjectivesThe use of electronic patient-reported outcome (ePRO) systems to support the management of patients with chronic kidney disease is increasing. This mixed-methods study aimed to comprehensively identify existing and developing ePRO systems, used in nephrology settings globally, ascertaining key characteristics and factors for successful implementation.Study designePRO systems and developers were identified through a scoping review of the literature and contact with field experts. Developers were invited to participate in a structured survey, to summarise key system characteristics including: (1) system objectives, (2) population, (3) PRO measures used, (4) level of automation, (5) reporting, (6) integration into workflow and (7) links to electronic health records/national registries. Subsequent semistructured interviews were conducted to explore responses.Setting and participantsEligible systems included those being developed or used in nephrology settings to assess ePROs and summarise results to care providers. System developers included those with a key responsibility for aspects of the design, development or implementation of an eligible system.Analytical approachStructured survey data were summarised using descriptive statistics. Interview transcripts were analysed using Codebook Thematic Analysis using domains from the Consolidated Framework for Implementation Research.ResultsFifteen unique ePRO systems were identified across seven countries; 10 system developers completed the structured survey and 7 participated in semistructured interviews. Despite system heterogeneity, reported features required for effective implementation included early and sustained patient involvement, clinician champions and expanding existing electronic platforms to integrate ePROs. Systems demonstrated several common features, with the majority being implemented within research settings, thereby affecting system implementation readiness for real-world application.ConclusionsThere has been considerable research investment in ePRO systems. The findings of this study outline key system features and factors to support the successful implementation of ePROs in routine kidney care.Cite Now

Integrating the patient voice: patient-centred and equitable clinical risk prediction for kidney health and disease

“…Perry et al describe a framework for including patients in the co-design and implementation of patient-reported outcome dashboards in CKD and cancer clinical settings [28]. These same principles as applied to electronic patient reported outcomes [28,29] could be applied to risk prediction interfaces in patientfacing clinical kidney care. Further, researchers working in this area should ensure that implementation approaches meet the needs of marginalized people with CKD and do not contribute to further inequity (e.g., only being available to those who are digitally literate or have access to costly devices).…”