title: Patient attitudes towards kidney transplant listing: qualitative findings from the ATTOM study.
abstract: BACKGROUND
  There is variation in time to listing and rates of listing for transplantation between renal units in the UK. While research has mainly focused on healthcare organization, little is known about patient perspectives of entry onto the transplant waiting list. This qualitative study aimed to explore patients' views and experiences of kidney transplant listing.
  
  
  METHODS
  Semi-structured interviews were conducted with patients aged under 75, who were on dialysis and on the transplant waiting list, not on the waiting list, undergoing assessment for listing or who had received a transplant. Patients were recruited from a purposive sample of nine UK renal units, which included transplanting and non-transplanting units and units with high and low wait-listing patterns. Interviews were transcribed verbatim and analysed using thematic analysis.
  
  
  RESULTS
  Fifty-three patients (5-7 per renal unit) were interviewed. Patients reported that they had received little information about the listing process. Some patients did not know if they were listed or had found they were not listed when they had thought they were on the list. Others expressed distress when they felt they had been excluded from potential listing based on age and/or comorbidity and felt the process was unfair. Many patients were not aware of pre-emptive transplantation and believed they had to be on dialysis before being able to be listed. There was some indication that pre-emptive transplantation was discussed more often in transplant than non-transplant units. Lastly, some patients were reluctant to consider family members as potential donors as they reported they would feel 'guilty' if the donor suffered subsequent negative effects.
  
  
  CONCLUSIONS
  Findings suggest a need to review current practice to further understand individual and organizational reasons for the renal unit variation identified in patient understanding of transplant listing. The communication of information warrants attention to ensure patients are fully informed about the listing process and opportunity for pre-emptive transplantation in a way that is meaningful and understandable to them.
authors.affiliation: Primary Care and Population Sciences, Faculty of Medicine, University of Southampton, Southampton, UK.
authors.forename: Melania
authors.initials: M
authors.lastname: Calestani
authors.affiliation: Primary Care and Population Sciences, Faculty of Medicine, University of Southampton, Southampton, UK.
authors.forename: Sarah
authors.initials: S
authors.lastname: Tonkin-Crine
authors.affiliation: UK Renal Registry, Southmead Hospital, Bristol, UK.
authors.forename: Rishi
authors.initials: R
authors.lastname: Pruthi
authors.affiliation: Primary Care and Population Sciences, Faculty of Medicine, University of Southampton, Southampton, UK.
authors.forename: Geraldine
authors.initials: G
authors.lastname: Leydon
authors.affiliation: Richard Bright Renal Unit, Southmead Hospital, Bristol, UK.
authors.forename: Rommel
authors.initials: R
authors.lastname: Ravanan
authors.affiliation: Department of Surgery, University of Cambridge and the NIHR Cambridge Biomedical Research Centre, Cambridge, UK.
authors.forename: J Andrew
authors.initials: JA
authors.lastname: Bradley
authors.affiliation: Richard Bright Renal Unit, Southmead Hospital, Bristol, UK.
authors.forename: Charles R
authors.initials: CR
authors.lastname: Tomson
authors.affiliation: Transplant Unit, Royal Infirmary of Edinburgh, Edinburgh, UK.
authors.forename: John L
authors.initials: JL
authors.lastname: Forsythe
authors.affiliation: Transplant Unit, Royal Infirmary of Edinburgh, Edinburgh, UK.
authors.forename: Gabriel C
authors.initials: GC
authors.lastname: Oniscu
authors.affiliation: Health Psychology Research Unit, Royal Holloway, University of London, Egham, UK.
authors.forename: Clare
authors.initials: C
authors.lastname: Bradley
authors.affiliation: Department of Health Services Research and Policy, London School of Hygiene and Tropical Medicine, London, UK.
authors.forename: John
authors.initials: J
authors.lastname: Cairns
authors.affiliation: Richard Bright Renal Unit, Southmead Hospital, Bristol, UK.
authors.forename: Christopher
authors.initials: C
authors.lastname: Dudley
authors.affiliation: Department of Surgery, University of Cambridge and the NIHR Cambridge Biomedical Research Centre, Cambridge, UK.
authors.forename: Christopher
authors.initials: C
authors.lastname: Watson
authors.affiliation: Medicine Ethics Society and History, School of Health and Population Sciences, University of Birmingham, Birmingham, UK.
authors.forename: Heather
authors.initials: H
authors.lastname: Draper
authors.affiliation: NHS Blood and Transplant, Bristol, UK.
authors.forename: Rachel J
authors.initials: RJ
authors.lastname: Johnson
authors.affiliation: Scottish Renal Registry, Paisley, UK.
authors.forename: Wendy
authors.initials: W
authors.lastname: Metcalfe
authors.affiliation: Regional Nephrology Unit, Belfast Health and Social Care Trust, Belfast, UK.
authors.forename: Damian G
authors.initials: DG
authors.lastname: Fogarty
authors.affiliation: Primary Care and Population Sciences, Faculty of Medicine, University of Southampton, Southampton, UK.
authors.forename: Paul
authors.initials: P
authors.lastname: Roderick
mesh_terms: D000328:Adult; D000368:Aged; D001294:Attitude to Health; D005260:Female; D006801:Humans; D007676:Kidney Failure, Chronic / Q000523:psychology / Q000601:surgery*; D016030:Kidney Transplantation / Q000523:psychology*; D008297:Male; D008875:Middle Aged; D010817:Physician-Patient Relations; D011795:Surveys and Questionnaires; D006113:United Kingdom; D014850:Waiting Lists; D055815:Young Adult
keywords: information provision; kidney transplant listing; patient perspective.; patient–clinician communication