Changes in quality of life, health status and other patient‐reported outcomes following simultaneous pancreas and kidney transplantation (SPKT): a quantitative and qualitative analysis within a UK‐wide programme

We examined quality of life (QoL) and other patient‐reported outcome measures (PROMs) in 95 simultaneous pancreas and kidney transplant (SPKT) recipients and 41 patients wait‐listed for SPKT recruited to the UK Access to Transplantation and Transplant Outcome Measures (ATTOM) programme. Wait‐listed patients transplanted within 12 months of recruitment ( n  = 22) were followed 12 months post‐transplant and compared with those still wait‐listed ( n  = 19) to examine pre‐ to post‐transplant changes. Qualitative interviews with ten SPKT recipients 12 months post‐transplant were analysed thematically. Cross‐sectional analyses showed several better 12‐month outcomes for SPKT recipients compared with those still wait‐listed, a trend to better health utilities but no difference in diabetes‐specific QoL or diabetes treatment satisfaction. Pre‐ to post‐transplant, SPKT recipients showed improved treatment satisfaction, well‐being, self‐reported health, generic QoL and less negative impact on renal‐specific QoL ( ps  < 0.05). Health utility values were better overall in transplant recipients and neither these nor diabetes‐specific QoL changed significantly in either group. Pre‐emptive transplant advantages seen in 12‐month cross‐sectional analyses disappeared when controlling for baseline values. Qualitative findings indicated diabetes complications, self‐imposed blood glucose monitoring and dietary restrictions continued to impact QoL negatively post‐transplant. Unrealistic expectations of SPKT caused some disappointment. Measuring condition‐specific PROMs over time will help in demonstrating the benefits and limitations of SPKT.