Exploring the views of patients not on the transplant waiting list: a qualitative study

Not all patients are suitable for kidney transplantation; however, little is known about the views and attitudes of patients who are not on the waiting list for transplantation.

This study aimed to determine the views and attitudes of patients who are not on the waiting list regarding the process of transplant allocation.

A grounded theory approach was used to develop theories from patient views, opinions and attitudes. Patients receiving dialysis, and not on the waiting list at a United Kingdom renal unit were identified by the renal counsellor and invited to take part. Five patients formed a focus group to enable construction of an interview schedule. Patients (n=10, different from those in the focus group) were interviewed until themes became saturated. Interview transcripts generated conceptual categories.

Seven conceptual categories emerged regarding access to transplantation. Patients experience emotions of loss relating to transplantation exacerbated by restrictions imposed by dialysis. Patients find coping mechanisms, accept their situation and trust that clinical decisions were equitable.

Patients trust their carers and support an efficacy argument when considering scarce resources. Communication should be improved to ensure clarity and understanding of clinical decisions.