Social research in chronic kidney disease, transplantation and organ donation

Patient-important outcomes in nephrology evaluation and research (PIONEER) Project

Aims

elicit outcomes that are important and relevant to patients on renal replacement therapy
develop a hierarchical categorisation of the outcomes that are important to patients
determine patients’ preferences for how patient-important outcomes should be measured in research and incorporated into routine clinical care

The project involves 3 phases:

a combined focus group and nominal group technique to elicit outcomes that are relevant and important to patients,
a questionnaire to develop a hierarchical categorisation of outcomes that are important to patients
a patient consultation workshop to determine patients’ preferences for how these outcomes can be measured and incorporated in research and clinical care.

Patient preferences for deceased donor kidneys

Kidney transplantation improves life expectancy and quality of life in patients with end-stage kidney disease. However, deceased donor kidneys are a scarce resource and there is ongoing debate about how to maximize the benefit obtained from the use of scarce kidneys while maintaining equity of access to transplantation. Also, the donor pool now includes “extended criteria donors” who older (i.e. >60 years) or less healthy. Compared with recipients who receive “standard” kidneys, extended criteria kidneys are associated with poorer transplant outcomes in terms of patient survival, acute rejection and graft failure.

The allocation of deceased donor kidneys is determined by policy makers and health professionals in transplantation, and the acceptance of individual kidneys for transplantation is at the discretion of the transplanting physician. Factors that are considered in the acceptance of an offered kidney include the quality of the kidney, tissue matching, and risk of cancer and infection transmission to the recipient.

Patients make little contribution to the allocation and acceptance of kidneys for transplantation. Therefore, the potential variations and mismatch in the importance patients attach to transplantation outcomes, compared with professionals and policy makers, may be overlooked.

The study aims to elicit patient perspectives on waiting for and receiving a deceased donor kidney, and to assess patient preferences for deceased donor kidneys.

Living donors

Individuals in the community have offered to be live donor, almost in all cases to a known recipient. Screening of live donors in Australia has been vital in minimising the physical and medical risks to the donors, but there is variability in the practice of live kidney donor screening and follow up. Also, live donors are not explicitly involved in the development of the guidelines or clinical recommendations and therefore their physical, mental, quality of life and even ethical concerns may not be addressed. This project investigates the experiences, needs and preferences of living organ donors.

Paediatric and adolescent experiences and perspectives following organ transplantation

This mixed-methods project aims to examine paediatric and adolescent experiences, perspectives and preferences in chronic kidney disease and kidney transplantation.