Kidney transplant patients’ preferences and priorities for outcomes after transplantation

Kidney transplantation is associated with improved survival and quality of life compared to dialysis, and is the preferred treatment for many patients with end-stage kidney disease being. Nonetheless, long-term treatment after transplantation requires a balance between maintaining optimal graft function and serious harms associated with immunosuppression including cancer, cardiovascular disease, diabetes and infection. Furthermore, drug related side effects impact on patient well-being and quality of life. Understanding the net benefits associated with a treatment regimen requires knowledge of adverse outcomes as well as benefits. It is increasingly recognised that patient values, preferences and priorities should play a role in all clinical decisions. To date, as with many chronic diseases, treatment decisions have been predominantly driven by clinicians with little systematic, explicit and formal patient involvement.The aims of the studies contained in this thesis are: • To elicit patient preferences and priorities for outcomes following transplantation, and • To evaluate the extent to which clinical trials of maintenance immunosuppression after kidney transplantation, report outcomes relevant to patient preferences and thereby, support an evaluation of both benefits and harms.Qualitative and quantitative techniques have been used to elicit patient preferences and evaluate reporting of patient relevant outcomes in clinical trials