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Changes in quality of life (QoL) and other patient-reported outcome measures (PROMs) in living-donor and deceased-donor kidney transplant recipients and those awaiting transplantation in the UK ATTOM programme: a longitudinal cohort questionnaire survey with additional qualitative interviews

Changes in quality of life (QoL) and other patient-reported outcome measures (PROMs) in living-donor and deceased-donor kidney transplant recipients and those awaiting transplantation in the UK ATTOM programme: a longitudinal cohort questionnaire survey with additional qualitative interviews
Changes in quality of life (QoL) and other patient-reported outcome measures (PROMs) in living-donor and deceased-donor kidney transplant recipients and those awaiting transplantation in the UK ATTOM programme: a longitudinal cohort questionnaire survey with additional qualitative interviews

Objective: to examine quality of life (QoL) and other patient-reported outcome measures (PROMs) in kidney transplant recipients and those awaiting transplantation. Design Longitudinal cohort questionnaire surveys and qualitative semi-structured interviews using thematic analysis with a pragmatic approach. 

Setting: completion of generic and disease-specific PROMs at two time points, and telephone interviews with participants UK-wide. 

Participants: 101 incident deceased-donor (DD) and 94 incident living-donor (LD) kidney transplant recipients, together with 165 patients on the waiting list (WL) from 18 UK centres recruited to the Access to Transplantation and Transplant Outcome Measures (ATTOM) programme completed PROMs at recruitment (November 2011 to March 2013) and 1 year follow-up. Forty-one of the 165 patients on the WL received a DD transplant and 26 received a LD transplant during the study period, completing PROMs initially as patients on the WL, and again 1 year post-transplant. A subsample of 10 LD and 10 DD recipients participated in qualitative semi-structured interviews. 

Results: LD recipients were younger, had more educational qualifications and more often received a transplant before dialysis. Controlling for these and other factors, cross-sectional analyses at 12 months post-transplant suggested better QoL, renal-dependent QoL and treatment satisfaction for LD than DD recipients. Patients on the WL reported worse outcomes compared with both transplant groups. However, longitudinal analyses (controlling for pre-transplant differences) showed that LD and DD recipients reported similarly improved health status and renal-dependent QoL (p<0.01) pre-transplant to post-transplant. Patients on the WL had worsened health status but no change in QoL. Qualitative analyses revealed transplant recipients' expectations influenced their recovery and satisfaction with transplant. Conclusions While cross-sectional analyses suggested LD kidney transplantation leads to better QoL and treatment satisfaction, longitudinal assessment showed similar QoL improvements in PROMs for both transplant groups, with better outcomes than for those still wait-listed. Regardless of transplant type, clinicians need to be aware that managing expectations is important for facilitating patients' adjustment post-transplant.

chronic renal failure, dialysis, nephrology, patient-reported outcome measures, quality of life, renal transplantation, transplant medicine, transplant surgery
2044-6055
Gibbons, Andrea
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Bayfield, Janet
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Cinnirella, Marco
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Draper, Heather
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Johnson, Rachel J.
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Oniscu, Gabriel C.
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Ravanan, Rommel
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Tomson, Charles
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Roderick, Paul
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Metcalfe, Wendy
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Forsythe, John L.R.
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Dudley, Christopher
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Watson, Christopher J.E.
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Bradley, J. Andrew
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Bradley, Clare
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Gibbons, Andrea
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Bayfield, Janet
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Cinnirella, Marco
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Draper, Heather
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Johnson, Rachel J.
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Oniscu, Gabriel C.
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Ravanan, Rommel
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Tomson, Charles
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Roderick, Paul
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Metcalfe, Wendy
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Forsythe, John L.R.
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Dudley, Christopher
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Watson, Christopher J.E.
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Bradley, J. Andrew
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Bradley, Clare
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Gibbons, Andrea, Bayfield, Janet, Cinnirella, Marco, Draper, Heather, Johnson, Rachel J., Oniscu, Gabriel C., Ravanan, Rommel, Tomson, Charles, Roderick, Paul, Metcalfe, Wendy, Forsythe, John L.R., Dudley, Christopher, Watson, Christopher J.E., Bradley, J. Andrew and Bradley, Clare (2021) Changes in quality of life (QoL) and other patient-reported outcome measures (PROMs) in living-donor and deceased-donor kidney transplant recipients and those awaiting transplantation in the UK ATTOM programme: a longitudinal cohort questionnaire survey with additional qualitative interviews. BMJ Open, 11 (4), [e047263]. (doi:10.1136/bmjopen-2020-047263).

Record type: Article

Abstract

Objective: to examine quality of life (QoL) and other patient-reported outcome measures (PROMs) in kidney transplant recipients and those awaiting transplantation. Design Longitudinal cohort questionnaire surveys and qualitative semi-structured interviews using thematic analysis with a pragmatic approach. 

Setting: completion of generic and disease-specific PROMs at two time points, and telephone interviews with participants UK-wide. 

Participants: 101 incident deceased-donor (DD) and 94 incident living-donor (LD) kidney transplant recipients, together with 165 patients on the waiting list (WL) from 18 UK centres recruited to the Access to Transplantation and Transplant Outcome Measures (ATTOM) programme completed PROMs at recruitment (November 2011 to March 2013) and 1 year follow-up. Forty-one of the 165 patients on the WL received a DD transplant and 26 received a LD transplant during the study period, completing PROMs initially as patients on the WL, and again 1 year post-transplant. A subsample of 10 LD and 10 DD recipients participated in qualitative semi-structured interviews. 

Results: LD recipients were younger, had more educational qualifications and more often received a transplant before dialysis. Controlling for these and other factors, cross-sectional analyses at 12 months post-transplant suggested better QoL, renal-dependent QoL and treatment satisfaction for LD than DD recipients. Patients on the WL reported worse outcomes compared with both transplant groups. However, longitudinal analyses (controlling for pre-transplant differences) showed that LD and DD recipients reported similarly improved health status and renal-dependent QoL (p<0.01) pre-transplant to post-transplant. Patients on the WL had worsened health status but no change in QoL. Qualitative analyses revealed transplant recipients' expectations influenced their recovery and satisfaction with transplant. Conclusions While cross-sectional analyses suggested LD kidney transplantation leads to better QoL and treatment satisfaction, longitudinal assessment showed similar QoL improvements in PROMs for both transplant groups, with better outcomes than for those still wait-listed. Regardless of transplant type, clinicians need to be aware that managing expectations is important for facilitating patients' adjustment post-transplant.

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Accepted/In Press date: 22 January 2021
Published date: 14 April 2021
Additional Information: Funding Information: 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). The views expressed are those of the authors and not necessarily those of the NHS, the NIHR or the Department of Health Funding Information: 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). The views expressed are those of the authors and not necessarily those of the NHS, the NIHR or the Department of Health. Publisher Copyright: © Copyright: Copyright 2021 Elsevier B.V., All rights reserved.
Keywords: chronic renal failure, dialysis, nephrology, patient-reported outcome measures, quality of life, renal transplantation, transplant medicine, transplant surgery

Identifiers

Local EPrints ID: 450691
URI: http://eprints.soton.ac.uk/id/eprint/450691
ISSN: 2044-6055
PURE UUID: 0cc95070-d99a-45b4-b336-54c7171eb9da
ORCID for Paul Roderick: ORCID iD orcid.org/0000-0001-9475-6850

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Date deposited: 06 Aug 2021 16:31
Last modified: 09 Jan 2022 02:47

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Contributors

Author: Andrea Gibbons
Author: Janet Bayfield
Author: Marco Cinnirella
Author: Heather Draper
Author: Rachel J. Johnson
Author: Gabriel C. Oniscu
Author: Rommel Ravanan
Author: Charles Tomson
Author: Paul Roderick ORCID iD
Author: Wendy Metcalfe
Author: John L.R. Forsythe
Author: Christopher Dudley
Author: Christopher J.E. Watson
Author: J. Andrew Bradley
Author: Clare Bradley

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