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Summary: Innovative research in deceased donation and transplantation often presents ethical challenges for researchers and those responsible for ethical governance of research. These challenges have been recognized as potential barriers to the conduct of research. We review the literature to identify and describe ethical considerations that may cause confusion or uncertainty in the context of research involving potential deceased donors or deceased donor transplantation. We normatively examine these considerations and discuss their implications for the ethical conduct of research. In addition to the complexities of research involving critically ill, dying or recently deceased individuals, uncertainty may arise regarding the ethical status of various individuals who may be involved in research aimed at improving availability and outcomes of organ transplantation. Consequently, routine ethical guidelines for clinical research may fail to provide clear guidance with regards to the design, conduct and governance of some deceased donation or transplantation studies. Ethical uncertainty may result in delays or barriers to research, or neglect of important ethical considerations. Specific ethical guidance is needed to support research in deceased donation and transplantation as the ethical considerations that arise in the design and conduct of such research may not be addressed in the existing guidelines for human research. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]