title: Opting out: a single-centre pilot study assessing the reasons for and the psychosocial impact of withdrawing from living kidney donor evaluation.
abstract: Understanding why individuals opt out of living donation is crucial to enhancing protections for all living donors and to identify modifiable barriers to donation. We developed an ethical approach to conducting research on individuals who opted out of living kidney donation and applied it in a small-scale qualitative study at one US transplant centre. The seven study participants (64% response rate) had varied reasons for opting out, the most prominent of which was concern about the financial burden from lost wages during the postoperative period. Several reported feeling alone during their decision-making process. Although no participants used an alibi, a centre-provided statement of non-eligibility to donate, all believed that centres should offer alibis to help preserve donor autonomy. Given the complexity of participants' decisions and the emotions they experienced before and after deciding not to donate, we suggest approaches for independent living donor advocates to support this population. This study demonstrates that research on individuals who opt out of donation is feasible and yields valuable insight into methods to improve the evaluation experience for potential living donors.
authors.affiliation: Department of Surgery, Section of Organ Transplantation and Immunology, Yale School of Medicine, New Haven, Connecticut, USA.
authors.forename: Carrie
authors.identifier: 0000-0002-1410-0112
authors.initials: C
authors.lastname: Thiessen
authors.affiliation: Yale School of Medicine, New Haven, Connecticut, USA.
authors.forename: Zainab
authors.initials: Z
authors.lastname: Jaji
authors.affiliation: Department of Surgery, Section of Organ Transplantation and Immunology, Yale School of Medicine, New Haven, Connecticut, USA.
authors.forename: Michael
authors.initials: M
authors.lastname: Joyce
authors.affiliation: Department of Psychiatry, Yale School of Medicine, New Haven, Connecticut, USA.
authors.forename: Paula
authors.initials: P
authors.lastname: Zimbrean
authors.affiliation: Center for Clinical Epidemiology and Biostatistics, University of Pennsylvania, Philadelphia, Pennsylvania, USA.
authors.forename: Peter
authors.initials: P
authors.lastname: Reese
authors.affiliation: Department of Surgery, Comprehensive Transplant Center, Center for Healthcare Studies, Northwestern University Feinberg School of Medicine, Chicago, Illinois, USA.
authors.forename: Elisa J
authors.initials: EJ
authors.lastname: Gordon
authors.affiliation: Department of Surgery, Section of Organ Transplantation and Immunology, Yale School of Medicine, New Haven, Connecticut, USA.
authors.forename: Sanjay
authors.initials: S
authors.lastname: Kulkarni
mesh_terms: D000328:Adult; D002755:Choice Behavior; D003657:Decision Making; D004644:Emotions; D006801:Humans; D007182:Income; D007668:Kidney; D016030:Kidney Transplantation / Q000523:psychology*; D019520:Living Donors / Q000523:psychology*; D009042:Motivation; D010865:Pilot Projects; D036301:Qualitative Research; D020858:Tissue and Organ Harvesting / Q000191:economics / Q000379:methods / Q000523:psychology*; D014481:United States
keywords: Donation/Procurement of Organs/Tissues; Transplantation