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

Kyte, Derek and Anderson, Nicola and Auti, Ram and Aiyegbusi, Olalekan Lee and Bishop, Jon and Bissell, Andrew and Brettell, Elizabeth and Calvert, Melanie and Chadburn, Marie and Cockwell, Paul and Dutton, Mary and Eddington, Helen and Forster, Elliot and Hadley, Gabby and Ives, Natalie J and Jackson, Louise and O'Brien, Sonja and Price, Gary and Sharpe, Keeley and Stringer, Stephanie and Stephenson, Gael and Verdi, Rav and Waters, Judi and Wilcockson, Adrian and Williams, Jim (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 (1). p. 55. ISSN 2509-8020.

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Official URL: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC73436...

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.

Item Type: Article
Subjects: QA Mathematics. Computing
WJ Urogenital system. Urology
Divisions: Clinical Support
Emergency Services > Renal
Related URLs:
Depositing User: Mrs Yolande Brookes
Date Deposited: 16 Jul 2020 11:22
Last Modified: 16 Jul 2020 11:24
URI: http://www.repository.uhblibrary.co.uk/id/eprint/3277

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