Article Text

Original research
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
  1. Andrea Gibbons1,2,
  2. Janet Bayfield2,3,
  3. Marco Cinnirella4,
  4. Heather Draper5,
  5. Rachel J Johnson6,
  6. Gabriel C Oniscu7,
  7. Rommel Ravanan8,
  8. Charles Tomson9,
  9. Paul Roderick10,
  10. Wendy Metcalfe7,
  11. John L R Forsythe7,11,
  12. Christopher Dudley8,
  13. Christopher J E Watson12,13,
  14. J Andrew Bradley12,13,
  15. Clare Bradley2,3
  1. 1Department of Psychology, University of Winchester, Winchester, UK
  2. 2Health Psychology Research Unit, Royal Holloway University of London, Egham, UK
  3. 3Health Psychology Research Unit, Health Psychology Research Ltd, Egham, UK
  4. 4Department of Psychology, Royal Holloway, University of London, Egham, UK
  5. 5Health Sciences, University of Warwick, Warwick Medical School, Coventry, UK
  6. 6Statistics and Clinical Studies, NHS Blood and Transplant, Bristol, UK
  7. 7Edinburgh Transplant Centre, Royal Infirmary of Edinburgh, Edinburgh, UK
  8. 8Richard Bright Renal Unit, Southmead Hospital, Bristol, UK
  9. 9Department of Renal Medicine, Newcastle Upon Tyne Hospitals NHS Foundation Trust, Newcastle Upon Tyne, UK
  10. 10Academic Unit of Primary Care and Population Sciences, Faculty of Medicine, University of Southampton, Southampton, UK
  11. 11Organ Donation and Transplantation, NHS Blood and Transplant Organ Donation and Transplantation Directorate, Bristol, UK
  12. 12Department of Surgery, University of Cambridge, Cambridge, UK
  13. 13NIHR 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
  1. Correspondence to Professor Clare Bradley; cb{at}healthpsychologyresearch.com

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.

  • renal transplantation
  • transplant surgery
  • nephrology
  • dialysis
  • chronic renal failure
  • transplant medicine
  • patient-reported outcome measures
  • quality of life

Data availability statement

No data are available.

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Footnotes

  • Twitter @gabriel_oniscu

  • Contributors AG contributed to the design of the qualitative study, developed the interview schedule, conducted the interviews, developed the coding framework, coded and analysed the quantitative and qualitative data, drafted the manuscript and edited and approved the final submission. JB managed telephone and postal data collection, coded qualitative data, provided feedback on initial drafts of the manuscript and edited and approved the final submission. MC contributed to the design of the qualitative study, development of the interview schedule and coding framework, provided feedback on initial drafts of the manuscript and edited and approved the final submission. HD contributed to the design of the qualitative study, development of the interview schedule and edited and approved the final submission. RJJ, GCO, RR, CT, PR, WM, JLRF and CD contributed to the design, organisation and conduct of the wider ATTOM programme including data collection for this substudy and provided feedback on the interview schedule, and edited and approved the final submission. JAB, RR, GCO, CJEW, CT, CD and JLRF conceived and designed the ATTOM programme, contributed to the design of the present studies, provided feedback on the interview schedule and edited and approved the final submission. CB contributed to the design of the quantitative and qualitative studies, analysis planning and interpretation of results, development of the interview schedule and coding framework, edited early drafts of the manuscript and edited and approved the final submission. AG and CB act as guarantor, and accept full responsibility for the work and/or the conduct of the study, had access to the data and controlled the decision to publish. The corresponding author attests that all listed authors meet authorship criteria and that no others meeting the criteria have been omitted. We thank the patient advisers for their contributions to the planning of ATTOM and discussions of findings.

  • 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.

  • Competing interests All authors completed the ICMJE uniform disclosure form at www.icmje.org/coi_disclosure.pdf. Professor Watson reports personal fees from GlaxoSmithKline outside the submitted work. Professor Clare Bradley reports grants from NIHR during the conduct of the study, and grants from NIHR and GlaxoSmithKline/ViiV Healthcare, outside the submitted work. CB is the majority shareholder in a company, Health Psychology Research Ltd, which licenses her patient-reported outcome measures, for others to use. These questionnaires include the RDQoL, RTSQ and W-BQ used in the ATTOM programme. CB owns the copyright in all of these instruments and when they are licensed for use by commercial companies in their clinical trials, receives royalties. All other authors declared no competing interests. The results presented in this paper have not been published previously in whole or part, except in abstract format.

  • Provenance and peer review Not commissioned; externally peer reviewed.

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