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Review
. 2023 Jul 12;13(7):e070927.
doi: 10.1136/bmjopen-2022-070927.

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

Nicola Elizabeth Anderson  1   2   3 , Derek Kyte  4   5 , Christel McMullan  4   6   7 , Paul Cockwell  4   8 , Olalekan Lee Aiyegbusi  4   3   7   9   10 , Rav Verdi  11 , Melanie Calvert  4   3   6   7   9   10
Affiliations
Review

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

Nicola Elizabeth Anderson et al. BMJ Open. .

Abstract

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.

Keywords: dialysis; patient reported outcome measures; qualitative research; quality of life; registries; telemedicine.

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Conflict of interest statement

Competing interests: NEA receives funding from the National Institute of Health and Care Research (NIHR) under its Clinical Doctoral Research Fellowship Programme (Grant Reference ICA-CDRF-2018-04-ST2-027), NIHR Applied Research Collaboration (ARC), West Midlands and declares personal fees from GlaxoSmithKline (GSK) outside the submitted work. MC is Director of the Birmingham Health Partners Centre for Regulatory Science and Innovation, Director of the Centre for the Centre for Patient Reported Outcomes Research and is a National Institute for Health and Care Research (NIHR) Senior Investigator. MC receives funding from the NIHR Birmingham Biomedical Research Centre, NIHR Surgical Reconstruction and Microbiology Research Centre, NIHR Blood and Transplant Research Unit (BTRU) in Precision Transplant and Cellular Therapeutics, and NIHR ARC West Midlands at the University of Birmingham and University Hospitals Birmingham NHS Foundation Trust, Health Data Research UK, Innovate UK (part of UK Research and Innovation), Macmillan Cancer Support, SPINE UK, UKRI, UCB Pharma, Janssen, GSK and Gilead. MC has received personal fees from Astellas, Aparito Ltd, CIS Oncology, Takeda, Merck, Daiichi Sankyo, Glaukos, GSK and the Patient-Centered Outcomes Research Institute (PCORI) outside the submitted work. DK reports grants from Macmillan Cancer Support, Innovate UK, the NIHR, NIHR Birmingham Biomedical Research Centre, and NIHR SRMRC at the University of Birmingham and University Hospitals Birmingham NHS Foundation Trust, and personal fees from Merck and GSK outside the submitted work. DK has received funding from the NIHR and Kidney Research UK and is Chief Investigator for the RePROM and RCAT studies. CM receives funding from the National Institute for Health Research (NIHR) Surgical Reconstruction and Microbiology Research Centre, the NIHR Birmingham-Oxford Blood and Transplant Research Unit (BTRU) in Precision Transplant and Cellular Therapeutics, Innovate UK, and has received personal fees from Aparito Ltd outside the submitted work. OLA receives funding from the NIHR Birmingham Biomedical Research Centre (BRC), NIHR Applied Research Collaboration (ARC), West Midlands, NIHR Birmingham-Oxford Blood and Transplant Research Unit (BTRU) in Precision Transplant and Cellular Therapeutics at the University of Birmingham and University Hospitals Birmingham NHS Foundation, Innovate UK (part of UK Research and Innovation), Gilead Sciences Ltd, Janssen Pharmaceuticals, Inc., and Sarcoma UK. OLA declares personal fees from Gilead Sciences Ltd, GlaxoSmithKline (GSK) and Merck outside the submitted work. The views expressed are those of the author(s) and not necessarily those of the NHS, the NIHR or the Department of Health and Social Care. The study sponsor and funders have no role in study design, including collection, management, analysis, and interpretation of data; writing of the report and the decision to submit the report for publication.

Figures

Figure 1
Figure 1
Conceptual framework and key findings.
See this image and copyright information in PMC

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