Article Text

Protocol
Feasibility and acceptability of e-PROMs data capture and feedback among patients receiving haemodialysis in the Symptom monitoring WIth Feedback Trial (SWIFT) pilot: protocol for a qualitative study in Australia
  1. Emily Duncanson1,
  2. Paul N Bennett2,
  3. Andrea Viecelli3,
  4. Kathryn Dansie1,
  5. William Handke4,
  6. Allison Tong5,
  7. Suetonia Palmer6,
  8. Shilpanjali Jesudason7,8,
  9. Stephen P McDonald1,7,
  10. Rachael L Morton9
  11. On behalf of the Symptom monitoring WIth Feedback Trial (SWIFT) Investigators
  1. 1Australia and New Zealand Dialysis and Transplant (ANZDATA) Registry, South Australian Health and Medical Research Institute, Adelaide, South Australia, Australia
  2. 2Faculty of Health Medicine Nursing and Behavioural Sciences, Deakin University, Burwood, Victoria, Australia
  3. 3School of Medicine, Princess Alexandra Hospital, Woolloongabba, Queensland, Australia
  4. 4Consumer representative, Private citizen, Canberra, ACT, Australia
  5. 5Sydney School of Public Health, The University of Sydney, Sydney, New South Wales, Australia
  6. 6Department of Medicine, University of Otago, Christchurch, New Zealand
  7. 7Central and Northern Adelaide Renal and Transplantation Services (CNARTS), Royal Adelaide Hospital, Adelaide, South Australia, Australia
  8. 8Faculty of Health and Medical Sciences, University of Adelaide, Adelaide, South Australia, Australia
  9. 9NHMRC Clinical Trials Centre, The University of Sydney, Camperdown, New South Wales, Australia
  1. Correspondence to Professor Rachael L Morton; Rachael.morton{at}ctc.usyd.edu.au

Abstract

Introduction People receiving haemodialysis experience a high symptom burden and impaired quality of life. The use of patient-reported outcome measures (PROMs) is increasing in nephrology care, however their acceptability, utility and impacts are not well understood.

Methods and analysis We describe a protocol for a qualitative study to evaluate the feasibility and acceptability of electronic-PROMs (e-PROMs) data capture and feedback in haemodialysis following the pilot Symptom monitoring WIth Feedback Trial (SWIFT). SWIFT involves linkage of e-PROMs data, including symptoms and health-related quality of life, to the Australia and New Zealand Dialysis and Transplant Registry with feedback to patients’ treating nephrologists and nurse unit managers. Focus groups and semistructured interviews will be conducted with nephrologists (n=15), dialysis nurses (n=24) and patients receiving haemodialysis (n=24) from six dialysis units in Australia. Question topics will include the technical and clinical feasibility and acceptability of e-PROMs reporting and feedback (including the barriers and enablers to uptake) and perceived impact on patient care and outcomes. Transcripts will be analysed thematically and guided by Normalisation Process Theory.

Ethics and dissemination Ethics approval was obtained from the relevant hospital Human Research Ethics Committees (HREC/18/CALHN/481; HREC/MML/54599). The findings from the SWIFT pilot and qualitative evaluation will inform the implementation of the SWIFT main trial, and more broadly, the use of e-PROMs in clinical settings and registries.

Trial registration number ANZCTRN12618001976279.

  • nephrology
  • dialysis
  • chronic renal failure
  • adult nephrology
  • qualitative research
http://creativecommons.org/licenses/by-nc/4.0/

This is an open access article distributed in accordance with the Creative Commons Attribution Non Commercial (CC BY-NC 4.0) license, which permits others to distribute, remix, adapt, build upon this work non-commercially, and license their derivative works on different terms, provided the original work is properly cited, appropriate credit is given, any changes made indicated, and the use is non-commercial. See: http://creativecommons.org/licenses/by-nc/4.0/.

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Footnotes

  • Twitter @allisontong1, @RachaelMorton12

  • Collaborators David Harris, David Johnston, Carmel Hawley, Chris Brown, John Simes, Liliana Laranjo, Rebecca Mister, Portia Westall, Enrico Coiera, Matthew Jose, Fergus Caskey and Cecile Couchoud as the Symptom monitoring WIth Feedback Trial (SWIFT) investigators.

  • Contributors RLM is the chief investigator of the SWIFT pilot study. She conceived and designed the study, drafted the manuscript and reviewed the final version. ED, PB, AV and KD designed the semistructured interview guide, drafted the manuscript and reviewed the final version. WH provided consumer input into the choice of instruments, participant information and consent forms, and reviewed the final draft. AT provided input on methodological aspects of the study design and analysis. SP, SJ and SPM designed the study, drafted the manuscript and reviewed the final version. The final draft was approved by all authors and co-investigators.

  • Funding SWIFT is supported by a Kidney Health Australia Medical and Scientific Research Funding Grant (KHA2018-RM), a National Health and Medical Research Council (NHMRC) Project Grant (APP1159051), and BEAT–CKD Programme Grant (APP1092957). Author RLM is supported by an NHMRC TRIP Fellowship (APP1150989) and a University of Sydney, Robinson Fellowship. Author AV is supported by a Princess Alexandra Research Foundation Research Grant and a Jacquot Research Establishment Fellowship.

  • Competing interests None declared.

  • Patient consent for publication Not required.

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

  • Supplemental material This content has been supplied by the author(s). It has not been vetted by BMJ Publishing Group Limited (BMJ) and may not have been peer-reviewed. Any opinions or recommendations discussed are solely those of the author(s) and are not endorsed by BMJ. BMJ disclaims all liability and responsibility arising from any reliance placed on the content. Where the content includes any translated material, BMJ does not warrant the accuracy and reliability of the translations (including but not limited to local regulations, clinical guidelines, terminology, drug names and drug dosages), and is not responsible for any error and/or omissions arising from translation and adaptation or otherwise.

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