title: Patient preferences, knowledge and beliefs about kidney allocation: qualitative findings from the UK-wide ATTOM programme.
abstract: 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.
  
  
  
  Qualitative study using semistructured interviews and thematic analysis based on a pragmatic approach.
  
  
  
  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.
  
  
  
  Semistructured telephone interviews conducted with participants in their own homes across the UK.
  
  
  
  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.
  
  
  
  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.
authors.affiliation: Health Psychology Research Unit, Royal Holloway University of London, Egham, UK.
authors.forename: Andrea
authors.identifier: 0000-0002-7774-0563
authors.initials: A
authors.lastname: Gibbons
authors.affiliation: Department of Psychology, Royal Holloway University of London, Egham, UK.
authors.forename: Marco
authors.initials: M
authors.lastname: Cinnirella
authors.affiliation: Health Psychology Research Unit, Royal Holloway University of London, Egham, UK.
authors.forename: Janet
authors.initials: J
authors.lastname: Bayfield
authors.affiliation: Transplant Unit, Royal Infirmary of Edinburgh, Edinburgh, UK.
authors.forename: Diana
authors.initials: D
authors.lastname: Wu
authors.affiliation: Division of Health Sciences, Warwick Medical School, Coventry, UK.
authors.forename: Heather
authors.initials: H
authors.lastname: Draper
authors.affiliation: Statistics and Clinical Studies, NHS Blood and Transplant, Bristol, UK.
authors.forename: Rachel J
authors.initials: RJ
authors.lastname: Johnson
authors.affiliation: Department of Renal Medicine, Freeman Hospital, Newcastle upon Tyne, UK.
authors.forename: Charles R V
authors.initials: CR
authors.lastname: Tomson
authors.affiliation: Transplant Unit, Royal Infirmary of Edinburgh, Edinburgh, UK.|Organ Donation and Transplantation, NHS Blood and Transplant, Bristol, UK.
authors.forename: John L R
authors.initials: JL
authors.lastname: Forsythe
authors.affiliation: Transplant Unit, Royal Infirmary of Edinburgh, Edinburgh, UK.
authors.forename: Wendy
authors.initials: W
authors.lastname: Metcalfe
authors.affiliation: Regional Nephrology and Transplant Centre, Belfast Health and Social Care Trust, Belfast, UK.
authors.forename: Damian
authors.initials: D
authors.lastname: Fogarty
authors.affiliation: Academic Unit of Primary Care and Population Sciences, Faculty of Medicine, University of Southampton, Southampton, UK.
authors.forename: Paul
authors.initials: P
authors.lastname: Roderick
authors.affiliation: Department of Renal Medicine, Southmead Hospital, Bristol, UK.
authors.forename: Rommel
authors.initials: R
authors.lastname: Ravanan
authors.affiliation: Transplant Unit, Royal Infirmary of Edinburgh, Edinburgh, UK.
authors.forename: Gabriel C
authors.initials: GC
authors.lastname: Oniscu
authors.affiliation: Department 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.
authors.forename: Christopher J E
authors.initials: CJ
authors.lastname: Watson
authors.affiliation: Department 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.
authors.forename: J Andrew
authors.initials: JA
authors.lastname: Bradley
authors.affiliation: Health Psychology Research Unit, Royal Holloway University of London, Egham, UK.|Health Psychology Research Ltd, Royal Holloway University of London, Egham, UK.
authors.forename: Clare
authors.initials: C
authors.lastname: Bradley
mesh_terms: D000328:Adult; D000368:Aged; D005260:Female; D007722:Health Knowledge, Attitudes, Practice; D006801:Humans; D007676:Kidney Failure, Chronic / Q000601:surgery*; D016030:Kidney Transplantation; D008297:Male; D008875:Middle Aged; D057240:Patient Preference; D036301:Qualitative Research; D040841:Resource Allocation; D009927:Tissue and Organ Procurement; D006113:United Kingdom; D014850:Waiting Lists
keywords: QUALITATIVE RESEARCH