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Renal medicine
Research
Patient preferences, knowledge and beliefs about kidney allocation: qualitative findings from the UK-wide ATTOM programme
  1. Andrea Gibbons1,
  2. Marco Cinnirella2,
  3. Janet Bayfield1,
  4. Diana Wu3,
  5. Heather Draper4,
  6. Rachel J Johnson5,
  7. Charles R V Tomson6,
  8. John L R Forsythe3,7,
  9. Wendy Metcalfe3,
  10. Damian Fogarty8,
  11. Paul Roderick9,
  12. Rommel Ravanan10,
  13. Gabriel C Oniscu3,
  14. Christopher J E Watson11,
  15. J Andrew Bradley11,
  16. Clare Bradley1,12
  1. 1Health Psychology Research Unit, Royal Holloway University of London, Egham, UK
  2. 2Department of Psychology, Royal Holloway University of London, Egham, UK
  3. 3Transplant Unit, Royal Infirmary of Edinburgh, Edinburgh, UK
  4. 4Division of Health Sciences, Warwick Medical School, Coventry, UK
  5. 5Statistics and Clinical Studies, NHS Blood and Transplant, Bristol, UK
  6. 6Department of Renal Medicine, Freeman Hospital, Newcastle upon Tyne, UK
  7. 7Organ Donation and Transplantation, NHS Blood and Transplant, Bristol, UK
  8. 8Regional Nephrology and Transplant Centre, Belfast Health and Social Care Trust, Belfast, UK
  9. 9Academic Unit of Primary Care and Population Sciences, Faculty of Medicine, University of Southampton, Southampton, UK
  10. 10Department of Renal Medicine, Southmead Hospital, Bristol, UK
  11. 11Department of Surgery, University of Cambridge, the NIHR Cambridge Biomedical Research Centre and the NIHR Blood and Transplant Research Unit in Organ Donation and Transplantation, University of Cambridge, Addenbrooke's Hospital, Cambridge, UK
  12. 12Health Psychology Research Ltd, Royal Holloway University of London, Egham, UK
  1. Correspondence to Andrea Gibbons; andrea.gibbons{at}rhul.ac.uk

Abstract

Objective To explore how patients who are wait-listed for or who have received a kidney transplant understand the current UK kidney allocation system, and their views on ways to allocate kidneys in the future.

Design Qualitative study using semistructured interviews and thematic analysis based on a pragmatic approach.

Participants 10 deceased-donor kidney transplant recipients, 10 live-donor kidney transplant recipients, 12 participants currently wait-listed for a kidney transplant and 4 participants whose kidney transplant failed.

Setting Semistructured telephone interviews conducted with participants in their own homes across the UK.

Results Three main themes were identified: uncertainty of knowledge of the allocation scheme; evaluation of the system and participant suggestions for future allocation schemes. Most participants identified human leucocyte anitgen matching as a factor in determining kidney allocation, but were often uncertain of the accuracy of their knowledge. In the absence of information that would allow a full assessment, the majority of participants consider that the current system is effective. A minority of participants were concerned about the perceived lack of transparency of the general decision-making processes within the scheme. Most participants felt that people who are younger and those better matched to the donor kidney should be prioritised for kidney allocation, but in contrast to the current scheme, less priority was considered appropriate for longer waiting patients. Some non-medical themes were also discussed, such as whether parents of dependent children should be prioritised for allocation, and whether patients with substance abuse problems be deprioritised.

Conclusions Our participants held differing views about the most important factors for kidney allocation, some of which were in contrast to the current scheme. Patient participation in reviewing future allocation policies will provide insight as to what is considered acceptable to patients and inform healthcare staff of the kinds of information patients would find most useful.

  • QUALITATIVE RESEARCH

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/

https://doi.org/10.1136/bmjopen-2016-013896

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    Footnotes

    • Twitter Follow Gabriel Oniscu @gabriel_oniscu

    • Contributors AG contributed to the design of the study, developed the interview schedule, conducted the interviews, developed the coding framework, coded and analysed the data, drafted the manuscript and edited and approved the final submission. MC contributed to the design of the study, developed the interview schedule, developed the coding framework, provided feedback on initial drafts of the manuscript and edited and approved the final submission. JB contributed to the design of the study, coded and analysed the data, provided feedback on initial drafts of the manuscript and edited and approved the final submission. DW provided feedback on initial drafts of the manuscript and edited and approved the final submission. HD contributed to the design of the study, developed the interview schedule and edited and approved the final submission. RJJ, CRVT, JLRF, WM, DF, PR, RR and GCO contributed to the design of the study, provided feedback on the interview schedule and edited and approved the final submission. CJEW and JAB conceived the ATTOM programme, contributed to the design of the study, provided feedback on the interview schedule and edited and approved the final submission. CB contributed to the design of the study, developed the interview schedule, developed the coding framework, edited early drafts of the manuscript and edited and approved the final submission.

    • Funding This article presents independent research funded by the National Institute for Health Research (NIHR) under the Programme Grants for Applied Research scheme (RP-PG-0109-10116).

    • Competing interests All authors completed the ICMJE uniform disclosure form at http://www.icmje.org/coi_disclosure.pdf. AG, CB and JLRF report grants from NIHR during the conduct of the study. CJEW reports personal fees from NHS Blood and Transplant during the conduct of the study. CB reports grants from GlaxoSmithKline/ViiV Healthcare, grants from NIHR Study of HAllucinations in Parkinson's disease, Eye disease and Dementia (SHAPED), grants from the Macular Society and personally owns the copyright in the RDQoL measure referred to in the manuscript and a related measure on which it is modelled, the ADDQoL measure for diabetes which is widely used in clinical trials and other research. These and other DQoL measures are licensed for use by others including the MacDQoL for macular disease and ThyDQoL for hypothyroidism. CB owns the copyright in all of these instruments and when they are licensed for use by commercial companies in their clinical trials, she receives royalties.

    • Ethics approval IRAS project ID: 68259. REC reference 11/EE/0120.

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

    • Data sharing statement No additional data are available.