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

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Development of an electronic patient-reported outcome measure (ePROM) system to aid the management of patients with advanced chronic kidney disease. / Kyte, Derek; Anderson, Nicola; Auti, Ram; Aiyegbusi, Olalekan Lee; Bishop, Jon; Bissell, Andrew ; Brettell, Elizabeth; Calvert, Melanie; Chadburn, Marie ; Cockwell, Paul; Dutton, Mary; Eddington, Helen; Forster, Elliot ; Hadley, Gabby; Rowland, Natalie; Jackson, Louise; O’Brien, Sonja ; Price, Gary; Sharpe, Keeley; Stringer, Stephanie ; Stephenson, Gael ; Verdi, Rav ; Waters, Judi; Wilcockson, Adrian; Williams, Jim .

In: Journal of Patient-Reported Outcomes, Vol. 4, 55, 08.07.2020.

Research output: Contribution to journalArticlepeer-review

Harvard

Kyte, D, Anderson, N, Auti, R, Aiyegbusi, OL, Bishop, J, Bissell, A, Brettell, E, Calvert, M, Chadburn, M, Cockwell, P, Dutton, M, Eddington, H, Forster, E, Hadley, G, Rowland, N, Jackson, L, O’Brien, S, Price, G, Sharpe, K, Stringer, S, Stephenson, G, Verdi, R, Waters, J, Wilcockson, A & 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, vol. 4, 55. https://doi.org/10.1186/s41687-020-00223-8

APA

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Author

Kyte, Derek ; Anderson, Nicola ; Auti, Ram ; Aiyegbusi, Olalekan Lee ; Bishop, Jon ; Bissell, Andrew ; Brettell, Elizabeth ; Calvert, Melanie ; Chadburn, Marie ; Cockwell, Paul ; Dutton, Mary ; Eddington, Helen ; Forster, Elliot ; Hadley, Gabby ; Rowland, Natalie ; Jackson, Louise ; O’Brien, Sonja ; Price, Gary ; Sharpe, Keeley ; Stringer, Stephanie ; Stephenson, Gael ; Verdi, Rav ; Waters, Judi ; Wilcockson, Adrian ; Williams, Jim . / Development of an electronic patient-reported outcome measure (ePROM) system to aid the management of patients with advanced chronic kidney disease. In: Journal of Patient-Reported Outcomes. 2020 ; Vol. 4.

Bibtex

@article{e29ce5abe38e42fa8ec26694c83c2338,
title = "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 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.",
keywords = "Chronic kidney disease, Patient-reported outcomes, Symptom monitoring",
author = "Derek Kyte and Nicola Anderson and Ram Auti and Aiyegbusi, {Olalekan Lee} and Jon Bishop and Andrew Bissell and Elizabeth Brettell and Melanie Calvert and Marie Chadburn and Paul Cockwell and Mary Dutton and Helen Eddington and Elliot Forster and Gabby Hadley and Natalie Rowland and Louise Jackson and Sonja O{\textquoteright}Brien and Gary Price and Keeley Sharpe and Stephanie Stringer and Gael Stephenson and Rav Verdi and Judi Waters and Adrian Wilcockson and Jim Williams",
year = "2020",
month = jul,
day = "8",
doi = "10.1186/s41687-020-00223-8",
language = "English",
volume = "4",
journal = "Journal of Patient-Reported Outcomes",
issn = "2509-8020",
publisher = "Springer",

}

RIS

TY - JOUR

T1 - Development of an electronic patient-reported outcome measure (ePROM) system to aid the management of patients with advanced chronic kidney disease

AU - Kyte, Derek

AU - Anderson, Nicola

AU - Auti, Ram

AU - Aiyegbusi, Olalekan Lee

AU - Bishop, Jon

AU - Bissell, Andrew

AU - Brettell, Elizabeth

AU - Calvert, Melanie

AU - Chadburn, Marie

AU - Cockwell, Paul

AU - Dutton, Mary

AU - Eddington, Helen

AU - Forster, Elliot

AU - Hadley, Gabby

AU - Rowland, Natalie

AU - Jackson, Louise

AU - O’Brien, Sonja

AU - Price, Gary

AU - Sharpe, Keeley

AU - Stringer, Stephanie

AU - Stephenson, Gael

AU - Verdi, Rav

AU - Waters, Judi

AU - Wilcockson, Adrian

AU - Williams, Jim

PY - 2020/7/8

Y1 - 2020/7/8

N2 - 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 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.

AB - 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 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.

KW - Chronic kidney disease

KW - Patient-reported outcomes

KW - Symptom monitoring

U2 - 10.1186/s41687-020-00223-8

DO - 10.1186/s41687-020-00223-8

M3 - Article

VL - 4

JO - Journal of Patient-Reported Outcomes

JF - Journal of Patient-Reported Outcomes

SN - 2509-8020

M1 - 55

ER -