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

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.

Results of a pilot feasibility randomised controlled trial exploring the use of an electronic patient-reported outcome measure in the management of UK patients with advanced chronic kidney disease

“…Development of the study design was informed by a series of meetings held with our Patient Advisory Group (AB, SO’B, GP, KS, RV and JW), established in 2016, which included people with lived experience of CKD. Members were also involved in the ePROM intervention codesign group20 and trial management group.…”

A narrative review of current evidence supporting the implementation of electronic patient-reported outcome measures in the management of chronic diseases

“…The RePROM study is currently being conducted by researchers and clinicians based at the Centre for Patient-Reported Outcomes Research at the University of Birmingham and the Queen Elizabeth Hospital Birmingham within the UK National Health Service University Hospitals Birmingham Foundation Trust (UHBFT). 78 The study will determine the feasibility of undertaking a full-scale RCT of ePROMs in the symptom monitoring of patients living with advanced CKD. 78 …”

“… 78 The study will determine the feasibility of undertaking a full-scale RCT of ePROMs in the symptom monitoring of patients living with advanced CKD. 78 …”

“…Thus, there is a need to demonstrate its potential impact in other chronic conditions. 78 The study will determine the feasibility of undertaking a full-scale RCT of ePROMs in the symptom monitoring of patients living with advanced CKD. 78 A pilot study also involving patients with CKD at the University Health Network, Toronto, Canada, will test the feasibility of implementing an ePROM toolkit to assess physical and emotional symptoms, using the PROMIS CATs.…”

“…The RePROM study is currently being conducted by researchers and clinicians based at the Centre for Patient-Reported Outcomes Research at the University of Birmingham and the Queen Elizabeth Hospital Birmingham within the UK National Health Service University Hospitals Birmingham Foundation Trust (UHBFT). 78 The study will determine the feasibility of undertaking a full-scale RCT of ePROMs in the symptom monitoring of patients living with advanced CKD. 78 A pilot study also involving patients with CKD at the University Health Network, Toronto, Canada, will test the feasibility of implementing an ePROM toolkit to assess physical and emotional symptoms, using the PROMIS CATs.…”