Fig 1 from Howell et al: Schematic representation of themes underpinning ranking of outcomes.

Immunosuppressive regimens are largely selected by physicians. Has anyone asked patients what they prefer? A unique and illustrative approach to understanding attitudes and perceptions of immunosuppression side effects from the viewpoint of a transplant recipient is the topic of a recent article in American Journal of Kidney Diseases. The lead author, Dr. Martin Howell, from The Children’s Hospital at Westmead, Australia, discussed this paper with Dr. Vinay Nair (eAJKD), eAJKD advisory board member.

eAJKD: Can you summarize your study findings?

MH: We aimed to describe the outcomes following kidney transplantation that are most important to transplant recipients, and the reasons underpinning their preferences and priorities. To achieve this, we conducted a number of nominal groups (a type of structured focus groups), from which we were able to quantitatively assess patient priorities and to qualitatively assess the reasoning behind them. Almost 50 unique outcomes were identified encompassing including serious adverse events, physical and emotional side effects, social impacts, and medication properties. The key finding of the study was that graft survival was overwhelmingly considered the most important outcome by transplant recipients, even more so than their own survival. The participants described a willingness to tolerate not only a range of side effects, but also serious adverse events such as cancer, in order to maximize graft survival.

eAJKD: In your study, a focus/nominal group technique was employed to understand transplant recipient experiences and perspectives on immunosuppression side effects. What advantage does this type of analysis have over other methods used to understand immunosuppressant side effects?

MH: The nominal group technique is essentially a structured “brain storming” session that aims to facilitate the generation and ranking of an exhaustive list of outcomes relevant to the participants. Through both group discussions and independent pen and paper exercises, individuals are encouraged to identify all possible outcomes that reflect their collective experiences. All outcomes are captured and ultimately ranked, thereby maximizing individual participation in the process. The group discussions play a number of important roles in the process. Firstly, they enable clarification of the meaning of each outcome. Secondly, they facilitate an understanding of the possible impact of an outcome beyond their own personal experience. And lastly, they allow for an assessment of the reasoning underpinning the ranking of outcomes.

eAJKD: In clinical practice, clinicians have seen patients who value graft survival more than death, but also those who clearly value their life more. Were you able to differentiate the group that prioritized graft survival from groups that did not, based on clinical characteristics?

MH: There have been previous studies that suggest transplant recipients may experience a high level of anxiety associated with graft failure and returning to dialysis. However, what was surprising was the overwhelming agreement amongst participants of the importance of graft survival over all other serious adverse events including death. This study suggests there may be a greater willingness by patients than assumed by researchers and clinicians to tolerate not only side effects but also serious adverse events in order to maximize graft survival.

eAJKD: Your study included a select population of patients who were willing to participate, and predominantly Caucasian. Do you believe that your findings can be generalized to populations of other ethnicities or cultures?

MH: It is to be expected that individual values and priorities would be influenced by ethnicity and cultural background, as well as experience and knowledge. It is not possible to predict how this may influence the relative importance placed on the outcomes identified by the participants in our study, in particular the relative importance of individual survival versus graft survival. However, there are many aspects of the study that have implications beyond our select population, including the large number of negative outcomes experienced by transplant recipients, the process of trivializing most of these outcomes in order to realize the benefits of immunosuppression, and an extremely negative perception of returning to dialysis.

eAJKD: Do you believe we could use recipient preferences when deciding what type of immunosuppression with which to treat a patient?

MH: A number of the participants in our study expressed a strong desire for involvement in decisions regarding immunosuppression, and this was a source of frustration and dissatisfaction. Specific side effects and consideration of fertility were two examples given as reasons for wanting to make changes to their immunosuppressive regimens that were not necessarily aligned with their clinician’s views. Others, given their specific circumstances, described a desire to maintain a higher level of immunosuppression in order to reduce the risk of rejection. Both of these examples show the role of individual values and priorities.

eAJKD: Your study gives us valuable information on what transplant recipients believe is important, and not important. Should we change our pretransplant education and consent process based on these findings?

MH: It is important to convey the message that transplantation is not a cure, and that graft survival varies accordingly to patient and donor factors. More importantly, discussions between patients and clinicians should also include consideration of the trade-offs between the effects of long-term immunosuppression on graft survival and adverse outcomes such as infections and cancers.

eAJKD: What further research questions would you like answered based on the results of your study?

MH: Our study provides only partial insight into preferences and priorities, and it cannot be concluded that transplant recipients would seek to maximize graft survival at all costs. Further research using quantitative methods across a broader recipient population is required to address this question.

In addition, the impact of a treatment regimen on an individual is a complex relationship between their experience of the illness and his or her values and personal circumstances. The impact of an intervention on a patient is most commonly evaluated using standardized instruments and measurement of the frequency of a side effect or adverse event. Whether this approach provides an appropriate basis for informing transplant recipients in the context of shared decision-making is unclear, and warrants further research.

eAJKD: What should clinicians take away from your study, and how should it change the way we practice?

MH: The key messages relevant to clinical practice are transplant recipients believe that side effects are a necessary part of their treatment, and this increases the likelihood that patients will not accurately report their experiences to their clinicians. Furthermore, given the uncertainty in the association between long-term outcomes and different immunosuppressive regimens, patient preferences and priorities should be considered. Finally, our study demonstrates that many kidney transplant recipients are willing to make significant trade-offs in order to maximize transplant survival, and may be willing to tolerate a higher level of immunosuppression than assumed by their clinician.

To view the article abstract or full-text (subscription required), please visit AJKD.org.