Identifying Outcomes that Are Important to Living Kidney Donors: A Nominal Group Technique Study

Abstract

Background and objectives: Living kidney donor candidates accept a range of risks and benefits when they decide to proceed with nephrectomy. Informed consent around this decision assumes they receive reliable data about outcomes they regard as critical to their decision making. We identified the outcomes most important to living kidney donors and described the reasons for their choices.

Design, setting, participants, & measurements: Previous donors were purposively sampled from three transplant units in Australia (Sydney and Melbourne) and Canada (Vancouver). In focus groups using the nominal group technique, participants identified outcomes of donation, ranked them in order of importance, and discussed the reasons for their preferences. An importance score was calculated for each outcome. Qualitative data were analyzed thematically.

Results: Across 14 groups, 123 donors aged 27-78 years identified 35 outcomes. Across all participants, the ten highest ranked outcomes were kidney function (importance=0.40, scale 0-1), time to recovery (0.27), surgical complications (0.24), effect on family (0.22), donor-recipient relationship (0.21), life satisfaction (0.18), lifestyle restrictions (0.18), kidney failure (0.14), mortality (0.13), and acute pain/discomfort (0.12). Kidney function and kidney failure were more important to Canadian participants, compared with Australian donors. The themes identified included worthwhile sacrifice, insignificance of risks and harms, confidence and empowerment, unfulfilled expectations, and heightened susceptibility.

Conclusions: Living kidney donors prioritized a range of outcomes, with the most important being kidney health and the surgical, lifestyle, functional, and psychosocial effects of donation. Donors also valued improvements to their family life and donor-recipient relationship. There were clear regional differences in the rankings.

Keywords: Acute Pain; Australia; Canada; Decision Making; Focus Groups; Informed Consent; Kidney Donors; Life Style; Living Donors; Nephrectomy; Nominal Group Technique; Personal Satisfaction; Qualitative Research; Renal Insufficiency; Risk Assessment; outcomes.

Graphical abstract

Figure 1.

Importance scores for donor outcomes by country. The five most important donor outcomes for Australian participants were effect on family (importance score=0.35, scale 0–1), followed by time to recovery (0.34), donor-recipient relationship (0.27), kidney function (0.26), and lifestyle restrictions (0.21). The five most important donor outcomes for Canadian participants were kidney function (0.57), followed by surgical complications (0.29), kidney failure (0.22), life satisfaction (0.20), and time to recovery (0.19). Postop, postoperative; UTI, urinary tract infection.

Figure 2.

Themes underpinning the importance of outcomes of donation to donors. Concern for their heightened susceptibility to kidney disease led participants to prioritize kidney function, kidney failure, and survival. However, confidence and empowerment to protect their health, and the perceived insignificance and irrelevance of risks and harms, underpinned the lower ranking of these outcomes for some donors. They considered their sacrifice to be worthwhile because of the psychosocial benefits they received and improvement to the recipient’s quality of life; surgical complications were therefore considered tolerable and of lower significance for some donors. However, some participants ranked surgical complications and functional impairment high because they had unfulfilled expectations regarding these outcomes, feeling misled, unprepared, or that these issues were not addressed in follow-up.