'Development of an electronic patient-reported outcome measure (ePROM) system to aid the management of patients with advanced chronic kidney disease'

Kyte, Derek; Anderson, N.; Auti, R.; Aiyegbusi, O.L.; Bishop, J.; Bissell, A.; Brettell, E.; Calvert, M.; Chadburn, M.; Cockwell, P.; Dutton, M.; Eddington, H.; Forster, E.; Hadley, G.; Ives, N.J.; Jackson, L.; O'Brien, S.; Price, G.; Sharpe, K.; Stringer, S.; Stephenson, G.; Verdi, R.; Waters, J.; Wilcockson, A.; Williams, J.

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Kyte, Derek ORCID: https://orcid.org/0000-0002-7679-6741, Anderson, N., Auti, R., Aiyegbusi, O.L., Bishop, J., Bissell, A., Brettell, E., Calvert, M., Chadburn, M., Cockwell, P., Dutton, M., Eddington, H., Forster, E., Hadley, G., Ives, N.J., Jackson, L., O'Brien, S., Price, G., Sharpe, K., Stringer, S., Stephenson, G., Verdi, R., Waters, J., Wilcockson, A. and Williams, J. (2020) 'Development of an electronic patient-reported outcome measure (ePROM) system to aid the management of patients with advanced chronic kidney disease'. Journal of Patient-Reported Outcomes, 4 (55). ISSN 2509-8020

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Abstract:

Background
Effective management of patients with chronic kidney disease (CKD) relies on timely detection of clinical deterioration towards end stage kidney failure. We aimed to design an electronic Patient-Reported Outcome Measure (ePROM) system, which would allow patients with advanced CKD (pre-dialysis) to: (i) remotely self-report their symptoms using a simple and secure online platform; (ii) share the data with the clinical team in real-time via the electronic patient record to help optimise care. We adopted a staged development process which included: a systematic review of PROMs used in CKD; formation of a co-design team; prototype system design/development, user acceptance testing and refinement; finalisation of the system for testing in a pilot/feasibility trial.

Results
A co-design team was convened, including patients with lived experience of CKD; clinical team members; IT/Informatics experts; academics; and Birmingham Clinical Trials Unit representatives. A prototype system was developed and iterative changes made before finalisation during a series of operational meetings. The system allows patients to remotely self-report their symptoms; provides tailored self-management advice; allows monitoring of real-time patient ePROM data; sends automated notifications to the patient/clinical team in the advent of a severe symptom report; and incorporates longitudinal ePROM symptom data into the electronic patient record. Feasibility of the system will be evaluated as part of the National Institute for Health Research funded RePROM (Renal electronic Patient-Reported Outcome Measure) pilot trial (ISRCTN12669006).

Conclusions
Routine ePROM collection with real-time feedback has the potential to improve outcomes and reduce health service costs. We have successfully developed a trial-ready ePROM system for advanced CKD, the feasibility of which is currently being explored in a pilot trial. Assuming feasibility is demonstrated, formal evaluation of efficacy will take place in a future multi-centre randomised controlled trial.

Additional Information:

© The Author(s). 2020 Open Access This article is licensed under a Creative Commons Attribution 4.0 International License, which permits use, sharing, adaptation, distribution and reproduction in any medium or format, as long as you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons licence, and indicate if changes were made. The images or other third party material in this article are included in the article's Creative Commons licence, unless indicated otherwise in a credit line to the material. If material is not included in the article's Creative Commons
licence and your intended use is not permitted by statutory regulation or exceeds the permitted use, you will need to obtain permission directly from the copyright holder. To view a copy of this licence, visit http://creativecommons.org/licenses/by/4.0/.

A pdf file of this article is available to download from this WRaP record.

Uncontrolled Discrete Keywords:

chronic kidney disease, patient-reported outcomes, symptom monitoring

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College of Health, Life and Environmental Sciences > School of Allied Health and Community

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School of Health and Wellbeing

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