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

Chronic kidney disease Patient-reported outcomes Symptom monitoring

Journal

Journal of patient-reported outcomes
ISSN: 2509-8020
Titre abrégé: J Patient Rep Outcomes
Pays: Germany
ID NLM: 101722688

Informations de publication

Date de publication:
08 Jul 2020
Historique:
received: 09 01 2020
accepted: 28 06 2020
entrez: 10 7 2020
pubmed: 10 7 2020
medline: 10 7 2020
Statut: epublish

Résumé

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. 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). 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.

Sections du résumé

BACKGROUND 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 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 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.

Identifiants

DOI: 10.1186/s41687-020-00223-8 PMID: 32642867 PMC: PMC7343684
pubmed: 32642867
doi: 10.1186/s41687-020-00223-8
pii: 10.1186/s41687-020-00223-8
pmc: PMC7343684
doi:

Types de publication

Journal Article

Langues

eng

Pagination

55

Subventions

Organisme : Department of Health
ID : PDF-2016-09-009
Pays : United Kingdom
Organisme : National Institute for Health Research
ID : PDF-2016-09-009

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Auteurs

Derek Kyte (D)

Centre for Patient-Reported Outcomes Research, University of Birmingham, Birmingham, UK. d.g.kyte@bham.ac.uk.
Institute of Applied Health Research, University of Birmingham, Birmingham, UK. d.g.kyte@bham.ac.uk.
National Institute for Health Research Birmingham Biomedical Research Centre, The Murray Learning Centre, University of Birmingham, Birmingham, UK. d.g.kyte@bham.ac.uk.
ORCID: 0000-0002-7679-6741

Nicola Anderson (N)

Centre for Patient-Reported Outcomes Research, University of Birmingham, Birmingham, UK.
University Hospitals Birmingham NHS Foundation Trust, Birmingham, UK.

Ram Auti (R)

University Hospitals Birmingham NHS Foundation Trust, Birmingham, UK.

Olalekan Lee Aiyegbusi (OL)

Centre for Patient-Reported Outcomes Research, University of Birmingham, Birmingham, UK.
Institute of Applied Health Research, University of Birmingham, Birmingham, UK.
National Institute for Health Research Birmingham Biomedical Research Centre, The Murray Learning Centre, University of Birmingham, Birmingham, UK.

Jon Bishop (J)

Birmingham Clinical Trials Unit (BCTU), Institute of Applied Health Research University of Birmingham, Birmingham, UK.

Andrew Bissell (A)

Patient Advisory Group, Centre for Patient-Reported Outcomes Research, Institute of Applied Health Research, University of Birmingham, Birmingham, UK.

Elizabeth Brettell (E)

Birmingham Clinical Trials Unit (BCTU), Institute of Applied Health Research University of Birmingham, Birmingham, UK.

Melanie Calvert (M)

Centre for Patient-Reported Outcomes Research, University of Birmingham, Birmingham, UK.
Institute of Applied Health Research, University of Birmingham, Birmingham, UK.
National Institute for Health Research Birmingham Biomedical Research Centre, The Murray Learning Centre, University of Birmingham, Birmingham, UK.
National Institute for Health Research Applied Research Centre West Midlands, University of Birmingham, Birmingham, UK.
National Institute for Health Research Surgical Reconstruction and Microbiology Research Centre, University of Birmingham, Birmingham, UK.
Birmingham Health Partners Centre for Regulatory Science and Innovation, University of Birmingham, Birmingham, UK.

Marie Chadburn (M)

Birmingham Clinical Trials Unit (BCTU), Institute of Applied Health Research University of Birmingham, Birmingham, UK.

Paul Cockwell (P)

University Hospitals Birmingham NHS Foundation Trust, Birmingham, UK.

Mary Dutton (M)

University Hospitals Birmingham NHS Foundation Trust, Birmingham, UK.

Helen Eddington (H)

University Hospitals Birmingham NHS Foundation Trust, Birmingham, UK.

Elliot Forster (E)

University Hospitals Birmingham NHS Foundation Trust, Birmingham, UK.

Gabby Hadley (G)

University Hospitals Birmingham NHS Foundation Trust, Birmingham, UK.

Natalie J Ives (NJ)

Centre for Patient-Reported Outcomes Research, University of Birmingham, Birmingham, UK.
Birmingham Clinical Trials Unit (BCTU), Institute of Applied Health Research University of Birmingham, Birmingham, UK.

Louise Jackson (L)

Health Economics Unit, Institute of Applied Health Research, University of Birmingham, Birmingham, UK.

Sonja O'Brien (S)

Patient Advisory Group, Centre for Patient-Reported Outcomes Research, Institute of Applied Health Research, University of Birmingham, Birmingham, UK.

Gary Price (G)

Centre for Patient-Reported Outcomes Research, University of Birmingham, Birmingham, UK.
Patient Advisory Group, Centre for Patient-Reported Outcomes Research, Institute of Applied Health Research, University of Birmingham, Birmingham, UK.

Keeley Sharpe (K)

Patient Advisory Group, Centre for Patient-Reported Outcomes Research, Institute of Applied Health Research, University of Birmingham, Birmingham, UK.

Stephanie Stringer (S)

University Hospitals Birmingham NHS Foundation Trust, Birmingham, UK.

Gael Stephenson (G)

University Hospitals Birmingham NHS Foundation Trust, Birmingham, UK.

Rav Verdi (R)

Patient Advisory Group, Centre for Patient-Reported Outcomes Research, Institute of Applied Health Research, University of Birmingham, Birmingham, UK.

Judi Waters (J)

Patient Advisory Group, Centre for Patient-Reported Outcomes Research, Institute of Applied Health Research, University of Birmingham, Birmingham, UK.

Adrian Wilcockson (A)

Birmingham Clinical Trials Unit (BCTU), Institute of Applied Health Research University of Birmingham, Birmingham, UK.

Jim Williams (J)

University Hospitals Birmingham NHS Foundation Trust, Birmingham, UK.

Classifications MeSH