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

Derek Kyte,Andrew Bissell,Gary Price,Nicola Anderson,Sonja O’Brien,Louise Jackson,Helen Eddington,Olalekan Lee Aiyegbusi,Marie Chadburn,Mary Ann Dutton ,Elliot Forster,Jonathan Bishop ,Adrian Wilcockson,Elizabeth Brettell,Ram Auti,Rav Verdi,Keeley Sharpe,Melanie Calvert,Paul Cockwell,Natalie Ives ,Stephanie Stringer,Gael Stephenson,Gabby Hadley,Judi Waters,James S Williams

doi:10.1186/s41687-020-00223-8

Abstract

BackgroundEffective 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.ResultsA 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).ConclusionsRoutine 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.

Highlights

Effective management of patients with chronic kidney disease (CKD) relies on timely detection of clinical deterioration towards end stage kidney failure
Design components A staged development process was adopted, 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; and finalisation of the system for use in the Reported Outcome (RePROM) pilot/feasibility trial
Patients access the electronic Patient-Reported Outcome Measures (ePROMs) system via the existing Queen Elizabeth Hospital Birmingham (QEHB) patient portal ‘myHealth’, which sits behind the National Health Service (NHS) firewall

Summary

Introduction

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. With increasing use of digital healthcare, there has been much interest in the potential of harnessing electronic Patient-Reported Outcome Measures (ePROMs) to aid the management of symptom burden and optimise use of limited healthcare resources [5] These measures allow patients to self-report their individual symptoms and overall symptom burden remotely using online platforms, with the opportunity to make the arising data available to health professionals in real-time to help support care [6]. Studies in cancer populations suggest that ePROM symptom monitoring may be associated with enhanced patientclinician communication and patient activation; earlier detection of adverse events; improved patient quality of life; reduced use of accident and emergency services; fewer inpatient hospital episodes; and improved survival, even for ‘computer-inexperienced’ patients [7,8,9,10,11,12,13,14]

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