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 using 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 (Nov 2011-March 2013) and one-year follow-up. Forty-one of the 165 WL patients received a DD transplant and 26 a LD transplant during the study period, completing PROMs initially as WL patients, and again one-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. WL patients 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- to post-transplant. WL patients had worsened health status but no change in QoL. Qualitative analyses revealed transplant recipients’ expectations influenced their recovery and satisfaction with transplant.
Conclusions: Whilst 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
- patient-reported outcome measures
- quality of life
- renal transplantation
- transplant medicine
- transplant surgery