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

Patient attitudes towards kidney transplant listing: qualitative findings from the ATTOM study
Patient attitudes towards kidney transplant listing: qualitative findings from the ATTOM study
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.
information provision, kidney transplant listing, patient perspective, patient–clinician communication
0931-0509
1-7
Calestani, Melania
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Tonkin-Crine, Sarah
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Pruthi, Rishi
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Leydon, Geraldine
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Ravanan, Rommel
478a10c3-977c-448e-8551-1437edba2acd
Bradley, J. Andrew
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Tomson, Charles R.
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Forsythe, John L.
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Oniscu, Gabriel C.
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Bradley, Clare
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Cairns, John
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Dudley, Christopher
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Watson, Christopher
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Draper, Heather
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Johnson, Rachel J.
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Metcalfe, Wendy
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Fogarty, Damian G.
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Roderick, Paul
dbb3cd11-4c51-4844-982b-0eb30ad5085a
Calestani, Melania
92fbb2ec-9279-4aaf-8f98-4ca36242bbe7
Tonkin-Crine, Sarah
65679835-9bdc-48b6-92f3-cc6322cccc4f
Pruthi, Rishi
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Leydon, Geraldine
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Ravanan, Rommel
478a10c3-977c-448e-8551-1437edba2acd
Bradley, J. Andrew
b4741218-b899-4a19-a9a3-4ad41969e81f
Tomson, Charles R.
bdc74344-9e09-4f16-81a8-3637fd6c8dcb
Forsythe, John L.
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Oniscu, Gabriel C.
1f47eec9-c622-477e-8cf0-e26c05e93fea
Bradley, Clare
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Cairns, John
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Dudley, Christopher
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Watson, Christopher
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Draper, Heather
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Johnson, Rachel J.
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Metcalfe, Wendy
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Fogarty, Damian G.
51dd186b-6e59-4a60-a1b6-69cde26410c2
Roderick, Paul
dbb3cd11-4c51-4844-982b-0eb30ad5085a

Calestani, Melania, Tonkin-Crine, Sarah, Pruthi, Rishi, Leydon, Geraldine, Ravanan, Rommel, Bradley, J. Andrew, Tomson, Charles R., Forsythe, John L., Oniscu, Gabriel C., Bradley, Clare, Cairns, John, Dudley, Christopher, Watson, Christopher, Draper, Heather, Johnson, Rachel J., Metcalfe, Wendy, Fogarty, Damian G. and Roderick, Paul (2014) Patient attitudes towards kidney transplant listing: qualitative findings from the ATTOM study. Nephrology, Dialysis, Transplantation, 1-7. (doi:10.1093/ndt/gfu188). (PMID:24997006)

Record type: Article

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.

Full text not available from this repository.

More information

Published date: 4 July 2014
Keywords: information provision, kidney transplant listing, patient perspective, patient–clinician communication
Organisations: Primary Care & Population Sciences

Identifiers

Local EPrints ID: 367232
URI: https://eprints.soton.ac.uk/id/eprint/367232
ISSN: 0931-0509
PURE UUID: ded88298-cf15-4b17-9ad6-ce2cb3f6dfbb
ORCID for Geraldine Leydon: ORCID iD orcid.org/0000-0001-5986-3300
ORCID for Paul Roderick: ORCID iD orcid.org/0000-0001-9475-6850

Catalogue record

Date deposited: 25 Jul 2014 12:56
Last modified: 24 Sep 2019 00:56

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Contributors

Author: Melania Calestani
Author: Sarah Tonkin-Crine
Author: Rishi Pruthi
Author: Rommel Ravanan
Author: J. Andrew Bradley
Author: Charles R. Tomson
Author: John L. Forsythe
Author: Gabriel C. Oniscu
Author: Clare Bradley
Author: John Cairns
Author: Christopher Dudley
Author: Christopher Watson
Author: Heather Draper
Author: Rachel J. Johnson
Author: Wendy Metcalfe
Author: Damian G. Fogarty
Author: Paul Roderick ORCID iD

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