Core Outcome Measures in Effectiveness Trials

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

General Information

Abstract:
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.

Aim:
To elicit perspectives and priorities of kidney transplant recipients for outcomes after transplant surgery and the reasons underpinning these priorities.

Authors:
Howell, M.
Tong, A.
Wong, G.
Craig, J. C.
Howard, K.

Publication

Journal:
American Journal of Kidney Diseases
Volume:
Issue:
Pages:
-
Year:
2012
DOI:
Further Study Information

Date:
January 2010 - April 2012
Funding source(s):
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).

Health Area

Disease Category
Kidney disease

Disease Name
End-stage kidney disease

Target Population

Age Range
18 - 100

Sex
Either


Nature / type of Intervention
Surgery

Method(s)

Focus group(s)
Nominal group technique (NGT)

A combined focus/nominal group technique 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 informed consent, and medically fit enough to attend a focus group session.

Each 2-hour focus/nominal group comprised 3 phases:
(1) group discussion of general experiences regarding kidney transplant and immunosuppressant medication,
(2) individual and group identification of outcomes associated with taking immunosuppressant medication, and
(3) individual ranking of outcomes identified by group discussion.

All groups convened in a hotel meeting room and were facilitated by either M.H. or A.T. Participants identified and discussed outcomes they believed were important and relevant to immunosuppression medication. The facilitator augmented the list with outcomes identified from the literature in relation to side effects and clinical outcomes.Using the consolidated list, participants were asked to individually rank the 10 most important outcomes in order of perceived importance. An observer (M.H. or A.T.) recorded field notes on group dynamics and interactions and on the context surrounding the discussion. All sessions were recorded and transcribed verbatim. Data were collected until theoretical saturation was reached, that is, until the process did not produce new insights.

Nominal group ranking: Individual participant rankings were used to calculate ranking scores for each outcome identified across all 8 nominal groups. The highest ranked outcome for each respondent was given a value of 10; the next most important, a value of 9; and so on, progressively down to the least important, which was assigned a value of 1. If an outcome was not ranked in the 10 most important, it was assigned a value of zero. A mean priority score for each outcome across all groups was calculated by summing ranking scores and dividing this by the maximum possible ranking score for that item. The maximum possible ranking score for a given outcome was calculated by multiplying the number of participants who considered the outcome by 10 (the maximum rank). When all participants who ranked an outcome scored it as the most important, the priority score was 100%; in contrast, a score of 0% meant that all participants who ranked that outcome did not score it in the top 10 most important outcomes.

Mean priority scores and number of times an outcome was voted in the top 10 were calculated for all participants, and to assess potential influences of time since transplant
surgery, these results were calculated separately for the groups in which participants’ dates of transplant occurred less than 1 year and those whose surgery was more than 1 year prior to the study.

Differences in mean priority scores between these groups were assessed using analysis of variance.


Stakeholders Involved

Consumers (patients)

Study Type

Patient perspectives
Prioritising

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