Objectives: The 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 Design: ePRO 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 Participants: Eligible 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 Approach: Structured survey data were summarised using descriptive statistics. Interview transcripts were analysed using Codebook Thematic Analysis using domains from the Consolidated Framework for Implementation Research.
Results: Fifteen 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.
Conclusions: There 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.
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http://dx.doi.org/10.1136/bmjopen-2022-070927 | DOI Listing |
Clin Kidney J
October 2024
Arbor Research Collaborative for Health, Ann Arbor, USA.
Background: The associations between self-reported chronic kidney disease-associated pruritus (CKD-aP) and patient-reported outcomes (PROs) have been reported using various instruments to assess itch. Data collection via multiple CKD-aP instruments allows the evaluation of different domains and measurements of CKD-aP burden and may help tailor data capture for future research or clinical care.
Methods: An electronic PRO (ePRO) survey was distributed to European hemodialysis (HD) patients enrolled in the Dialysis Outcomes and Practice Patterns Study (DOPPS) in 2021-23.
Support Care Cancer
December 2024
Department of Oncology, Ina Central Hospital, 1313-1 Koshiro-Kubo, Ina, Nagano, 396-8555, Japan.
Support Care Cancer
December 2024
Department of Medical Oncology, Peter MacCallum Cancer Centre, Melbourne, Australia.
Background: Utilising electronic patient-reported outcomes (ePRO) to monitor symptoms can improve patient outcomes. However, ePRO systems are typically not co-designed with end-users which may limit their utility and long-term sustainability. We aimed to co-design a real-time ePRO symptom monitoring system for immune checkpoint inhibitor (ICI) toxicities.
View Article and Find Full Text PDFZ Evid Fortbild Qual Gesundhwes
December 2024
Nationales Zentrum für Tumorerkrankungen (NCT/ UCC), Universitätsklinikum Carl Gustav Carus, Technische Universität Dresden, Dresden, Deutschland.
Background: To what extent and under what conditions electronically captured patient-reported outcomes (ePROs) can be used in routine medical care and contribute to improved patient care is a widely discussed question. In the field of oncology, few studies in Germany have focused this topic that go beyond the scope of time-limited studies.
Method: First, we present the centrally coordinated collection of ePROs in the routine care of a comprehensive cancer center of the German Cancer Aid in its development, and then describe its qualitative dimension.
Int J Clin Oncol
November 2024
Department of Gynecology and Obstetrics, Graduate School of Medicine and Faculty of Medicine, Kyoto University, 54 Kawahara-cho, Shogoin, Sakyo-ku, Kyoto, 606-8507, Japan.
Improved cancer treatment outcomes have increased the demand for medical care that considers the quality of life of patients with cancer. Patient-reported outcomes (PROs) help assess the quality of life because they involve direct evaluation of the patients. Recently, electronic PROs (ePROs) have been used in clinical cancer care settings in Europe and the United States.
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