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Using Patient-Reported Outcome Measures (PROMs) to promote quality of care and safety in the management of patients with Advanced Chronic Kidney disease (PRO-trACK project): a mixed-methods project protocol
  1. Olalekan Lee Aiyegbusi1,2,
  2. Derek Kyte1,2,
  3. Paul Cockwell1,3,
  4. Tom Marshall1,2,
  5. Mary Dutton3,
  6. Anita Slade1,2,
  7. Neil Marklew4,
  8. Gary Price4,
  9. Rav Verdi4,
  10. Judi Waters4,
  11. Keeley Sharpe4,
  12. Melanie Calvert1,2
  1. 1 Centre for Patient-Reported Outcomes Research, University of Birmingham, Birmingham, UK
  2. 2 Institute of Applied Health Research, University of Birmingham, Birmingham, UK
  3. 3 Department of Renal Medicine, University Hospitals Birmingham NHS Foundation Trust, Queen Elizabeth Hospital Birmingham, Birmingham, UK
  4. 4 Patient Advisory Group Member, Centre for Patient-Reported Outcomes Research, University of Birmingham, Birmingham, UK
  1. Correspondence to Derek Kyte; d.g.kyte{at}bham.ac.uk

Abstract

Introduction Advanced chronic kidney disease (CKD) has a major effect on the quality of life and health status of patients and requires accurate and responsive management. The use of electronic patient-reported outcome measures (ePROMs) could assist patients with advanced pre-dialysis CKD, and the clinicians responsible for their care, by identifying important changes in symptom burden in real time. We report the protocol for ‘Using Patient-Reported Outcome measures (PROMs) to promote quality of care and safety in the management of patients with Advanced Chronic Kidney Disease’ (PRO-trACK) project, which will explore the feasibility and validity of an ePROM system for use in patients with advanced CKD.

Methods and analysis The project will use a mixed-methods approach in three studies: (1) usability testing of the ePROM system involving up to 30 patients and focusing on acceptability and technical performance/stability; (2) ascertaining the views of patient and clinician stakeholders on the optimal use and administration of the CKD ePROM system—this will involve qualitative face-to-face/telephone interviewing with up to 30 patients or until saturation is achieved, focus groups with up to 15 clinical staff, management and IT team members; (3) psychometric assessment of the system, within a cohort of at least 180 patients with advanced CKD, to establish the measurement properties of the ePROM.

Ethics and dissemination This project was approved by the West Midlands Edgbaston Research Ethics Committee (Reference 17/WM/0010) and received Health Research Authority (HRA) approval on 24 February 2017.

The findings from this project will be provided to clinicians at the Department of Renal Medicine, Queen Elizabeth Hospitals, Birmingham (QEHB), NHS England, presented at conferences and to the Kidney Patients’ Association, British Kidney Patient Association and the British Renal Society. Articles based on the findings will be written and submitted for publication in peer-reviewed journals.

  • qualitative research
  • usability testing
  • nephrology
  • statistics&research methods

This is an Open Access article distributed in accordance with the terms of the Creative Commons Attribution (CC BY 4.0) license, which permits others to distribute, remix, adapt and build upon this work, for commercial use, provided the original work is properly cited. See: http://creativecommons.org/licenses/by/4.0/

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Footnotes

  • Contributors MC is the guarantor for this project. The project was conceived by MC, DK, PC and TM and designed by MC, DK, PC, TM, OLA, MD and AS. OLA drafted the protocol manuscript. The manuscript was reviewed by MC, DK, PC, TM, OLA, MD, AS, NM, GP, RV, JW and KS. The final draft was approved by all authors.

  • Funding This project is funded as part of the Health Foundation’s PhD Awards for Improvement Science. The Health Foundation is an independent charity working to improve the quality of healthcare in the UK. The Health Foundation was not involved in any other aspect of the project. TM is partly funded by the National Institute for Health Research (NIHR) through the Collaborations for Leadership in Applied Health Research and Care for West Midlands (CLAHRC/WM). This paper presents independent research and the views expressed in this publication are not necessarily those of the NIHR, the Department of Health, NHS Partner Trusts, University of Birmingham or the CLAHRC/WM Management Group.

  • Competing interests None declared.

  • Ethics approval West Midlands Edgbaston Research Ethics Committee (Reference 17/WM/0010).

  • Provenance and peer review Not commissioned; externally peer reviewed.