Special Article
Important Outcomes for Kidney Transplant Recipients: A Nominal Group and Qualitative Study

https://doi.org/10.1053/j.ajkd.2012.02.339Get rights and content

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.

Section snippets

Study Design and Participants

A combined focus/nominal group technique18 was used to generate a list of outcomes that kidney transplant recipients identify with taking immunosuppressant medication and to rank the relative importance of these outcomes.

Participants were recruited from 3 large transplant units located in Sydney and Melbourne. They were purposively selected to achieve a mix of sex, age, and time since transplant. Participants were eligible if they were English speaking, older than 18 years, able to give

Participant Characteristics

Of 62 kidney transplant recipients who accepted an invitation to attend a focus/nominal group, 57 (92%) participated in 1 of 8 groups. Reasons for nonattendance were illness (3), unable to arrange transport on that day (1), and not stated (1). Ages ranged from 20-70 (mean, 47.8) years, and 33 (58%) were men (Table 1). Fifty-five (95%) had received a kidney transplant; 2, a combined kidney-pancreas transplant; and 1, a combined kidney-liver transplant. Four (7%) had received more than one

Discussion

Our study shows that transplant recipients are willing to trade off not only unpleasant side effects of stronger immunosuppression, such as weight gain and hair loss, but also serious events, such as cancer, in order to maintain stable and satisfactory transplant function and thereby avoid a return to dialysis therapy. Transplant rejection and decreasing kidney function were viewed as inevitably leading to transplant loss, the fear of which was so dominant that only a small number of

Acknowledgements

We thank the kidney transplant recipients from Westmead, Royal Prince Alfred, and Royal Melbourne hospitals who participated in this study and who generously gave their time and shared their opinions and personal experiences.

Support: Dr Howell is supported by National Health and Medical Research Council (NHMRC) Capacity Building Grant ID 571372. Dr Tong is supported by a postdoctoral research fellowship (funded under the NHMRC Capacity Building Grant in Population Health, ID 457281). The

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    Originally published online May 11, 2012.

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