Important outcomes for kidney transplant recipients: a nominal group and qualitative study

Background: Immunosuppression is associated with a number of adverse outcomes, but typically it is the physician, not the patient, who decides on the drug regimen. The perspective of the patient in clinical decision making is increasingly recognized in other settings, but the perspectives of kidney transplant recipients are largely unknown. The aim of this study was to elicit patient perspectives and priorities for outcomes after transplant and the reasons underpinning these priorities.

Methods: Outcome identification and ranking were undertaken using a focus/nominal group technique. Adult kidney transplant recipients, purposively sampled from 3 transplant centers, participated in 1 of 8 nominal groups. Each group (6-10 participants) listed and ranked outcomes relevant to immunosuppressant medications.

Results: 57 participants identified 47 outcomes relevant to immunosuppression after transplant surgery. Transplant survival consistently was ranked more highly than any other outcome, followed by damage to other organs, survival, and cancer. Only 12% of participants ranked their own survival as more important than transplant survival. In contrast, the relative importance of side effects differed among participants. Themes underpinning priorities were concern for fatal and serious events; relevance to life circumstance; acceptance, trivialization, and tolerance; and future outlook. Participants described a willingness to tolerate side effects, dependent on personal relevance and ability to manage the side effect.

Conclusions: Transplant survival appears to be more important than life itself to kidney transplant recipients, suggesting that they may be willing to tolerate a higher level of immunosuppression than is assumed by clinicians and researchers.