TY - JOUR
T1 - Identifying outcomes that are important to living kidney donors
T2 - A nominal group technique study
AU - Hanson, Camilla S.
AU - Chapman, Jeremy R.
AU - Gill, John S.
AU - Kanellis, John
AU - Wong, Germaine
AU - Craig, Jonathan C.
AU - Teixeira-Pinto, Armando
AU - Chadban, Steve J.
AU - Garg, Amit X.
AU - Ralph, Angelique F.
AU - Pinter, Jule
AU - Lewis, Joshua R.
AU - Tong, Allison
PY - 2018/6/7
Y1 - 2018/6/7
N2 - 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.
AB - 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.
KW - Kidney donors
KW - Life style
KW - Living donors
KW - Nephrectomy
KW - Personal satisfaction
KW - Renal
KW - Risk assessment
KW - Qualitative research
KW - Australia
KW - Canada
KW - Acute pain
UR - http://www.scopus.com/inward/record.url?scp=85048270123&partnerID=8YFLogxK
UR - http://purl.org/au-research/grants/NHMRC/1092741
UR - http://purl.org/au-research/grants/NHMRC/1106716
UR - http://purl.org/au-research/grants/NHMRC/1107474
UR - http://purl.org/au-research/grants/ARC/DE120101710
U2 - 10.2215/CJN.13441217
DO - 10.2215/CJN.13441217
M3 - Article
SN - 1555-905X
VL - 13
SP - 916
EP - 926
JO - Clinical Journal of the American Society of Nephrology
JF - Clinical Journal of the American Society of Nephrology
IS - 6
ER -