Camilla S Hanson1,2, Jeremy R Chapman3, John S Gill4, John Kanellis5, Germaine Wong6,2,3, Jonathan C Craig6,2, Armando Teixeira-Pinto6,2, Steve J Chadban7,8, Amit X Garg9, Angelique F Ralph6,2, Jule Pinter2,10, Joshua R Lewis6,2, Allison Tong6,2. 1. Sydney School of Public Health and camilla.hanson@sydney.edu.au. 2. Centre for Kidney Research, The Children's Hospital at Westmead, Sydney, New South Wales, Australia. 3. Centre for Transplant and Renal Research, Westmead Institute for Medical Research, The University of Sydney, Westmead, New South Wales, Australia. 4. Division of Nephrology, University of British Columbia, Vancouver, British Columbia, Canada. 5. Department of Nephrology, Monash Health and Centre for Inflammatory Diseases, Department of Medicine, Monash University, Clayton, Victoria, Australia. 6. Sydney School of Public Health and. 7. Kidney Node, Charles Perkins Centre, The University of Sydney, Sydney, New South Wales, Australia. 8. Renal Medicine, Royal Prince Alfred Hospital, Camperdown, New South Wales, Australia. 9. Division of Nephrology, Department of Medicine, Western University, London, Ontario, Canada; and. 10. Division of Nephrology, Department of Medicine, Universitätsklinikum Würzburg, Würzburg, Germany.
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.
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.
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Authors: Angelique F Ralph; Phyllis Butow; Jonathan C Craig; Germaine Wong; Steve J Chadban; Grant Luxton; Talia Gutman; Camilla S Hanson; Angela Ju; Allison Tong Journal: BMJ Open Date: 2019-04-04 Impact factor: 2.692
Authors: Ngan N Lam; Christine Dipchand; Marie-Chantal Fortin; Bethany J Foster; Anand Ghanekar; Isabelle Houde; Bryce Kiberd; Scott Klarenbach; Greg A Knoll; David Landsberg; Patrick P Luke; Rahul Mainra; Sunita K Singh; Leroy Storsley; Jagbir Gill Journal: Can J Kidney Health Dis Date: 2020-06-09