Nephrol Dial Transplant. 2014 Jul 4. pii: gfu188. [Epub ahead of print]

Patient attitudes towards kidney transplant listing: qualitative findings from the ATTOM study.

Calestani M1, Tonkin-Crine S1, Pruthi R2, Leydon G1, Ravanan R3, Bradley JA4, Tomson CR3, Forsythe JL5, Oniscu GC5, Bradley C6, Cairns J7, Dudley C3,Watson C4, Draper H8, Johnson RJ9, Metcalfe W10, Fogarty DG11, Roderick P1; on Behalf of ATTOM Investigators.

Author information

• 1Primary Care and Population Sciences, Faculty of Medicine, University of Southampton, Southampton, UK.
• 2UK Renal Registry, Southmead Hospital, Bristol, UK.
• 3Richard Bright Renal Unit, Southmead Hospital, Bristol, UK.
• 4Department of Surgery, University of Cambridge and the NIHR Cambridge Biomedical Research Centre, Cambridge, UK.
• 5Transplant Unit, Royal Infirmary of Edinburgh, Edinburgh, UK.
• 6Health Psychology Research Unit, Royal Holloway, University of London, Egham, UK.
• 7Department of Health Services Research and Policy, London School of Hygiene and Tropical Medicine, London, UK.
• 8Medicine Ethics Society and History, School of Health and Population Sciences, University of Birmingham, Birmingham, UK.
• 9NHS Blood and Transplant, Bristol, UK.
• 10Scottish Renal Registry, Paisley, UK.
• 11Regional Nephrology Unit, Belfast Health and Social Care Trust, Belfast, UK.

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.