title: Emotional and Financial Experiences of Kidney Donors over the Past 50 Years: The RELIVE Study.
abstract: OBJECTIVE
  Most kidney donors view their experience positively, but some may experience psychosocial and financial burdens. We hypothesized that certain donor characteristics, poor outcome of the recipient, negative perceptions of care, and lack of support may be associated with poor psychosocial outcomes for donors.
  
  
  METHODS
  The Renal and Lung Living Donors Evaluation Study (RELIVE) examined long-term medical and psychosocial outcomes for kidney donors (at three U.S. transplant centers) who donated between 1963 and 2005. Standardized questionnaires evaluated donor perspectives, recovery time, social support, motivation, financial impact, insurability after donation, and current psychological status. Questionnaires were mailed to 6909 donors.
  
  
  RESULTS
  Questionnaires were returned by 2455 donors, who had donated 17 ± 10 years earlier (range, 5-48 years), a response rate of 36%. Most (95%) rated their overall donation experience as good to excellent. Rating the overall donor experience more negatively was associated with donor complications, psychological difficulties, recipient graft failure, and longer time since donation. Nine percent (n=231) reported one or more of the following poor psychosocial outcomes: fair or poor overall donor experience, financial burden, regret or discomfort with decision to donate, or psychological difficulties since donation. Recipient graft failure was the only predictor for reporting one or more of these poor psychosocial outcomes (odds ratio, 1.77; 95% confidence interval, 1.33 to 2.34). Donors with lower educational attainment experienced greater financial burden. One of five employed donors took unpaid leave; 2% reported health and life insurability concerns.
  
  
  CONCLUSIONS
  Although the majority of donors viewed their overall donation experience positively, almost 1 in 10 donors reported at least one negative consequence related to donation. Recipient graft failure was associated with poor psychosocial outcome, defined as one or more of these negative consequences. Some donors were financially disadvantaged, and some experienced insurance difficulties. Interventions to avoid negative psychosocial and financial consequences are warranted.
authors.affiliation: Due to the number of contributing authors, the affiliations are provided in the Supplemental Material. jaco1772@umn.edu.
authors.forename: Cheryl L
authors.initials: CL
authors.lastname: Jacobs
authors.affiliation: Due to the number of contributing authors, the affiliations are provided in the Supplemental Material.
authors.forename: Cynthia R
authors.initials: CR
authors.lastname: Gross
authors.affiliation: Due to the number of contributing authors, the affiliations are provided in the Supplemental Material.
authors.forename: Emily E
authors.initials: EE
authors.lastname: Messersmith
authors.affiliation: Due to the number of contributing authors, the affiliations are provided in the Supplemental Material.
authors.forename: Barry A
authors.initials: BA
authors.lastname: Hong
authors.affiliation: Due to the number of contributing authors, the affiliations are provided in the Supplemental Material.
authors.forename: Brenda W
authors.initials: BW
authors.lastname: Gillespie
authors.affiliation: Due to the number of contributing authors, the affiliations are provided in the Supplemental Material.
authors.forename: Peg
authors.initials: P
authors.lastname: Hill-Callahan
authors.affiliation: Due to the number of contributing authors, the affiliations are provided in the Supplemental Material.
authors.forename: Sandra J
authors.initials: SJ
authors.lastname: Taler
authors.affiliation: Due to the number of contributing authors, the affiliations are provided in the Supplemental Material.
authors.forename: Sheila G
authors.initials: SG
authors.lastname: Jowsey
authors.affiliation: Due to the number of contributing authors, the affiliations are provided in the Supplemental Material.
authors.forename: Tim J
authors.initials: TJ
authors.lastname: Beebe
authors.affiliation: Due to the number of contributing authors, the affiliations are provided in the Supplemental Material.
authors.forename: Arthur J
authors.initials: AJ
authors.lastname: Matas
authors.affiliation: Due to the number of contributing authors, the affiliations are provided in the Supplemental Material.
authors.forename: Jonah
authors.initials: J
authors.lastname: Odim
authors.affiliation: Due to the number of contributing authors, the affiliations are provided in the Supplemental Material.
authors.forename: Hassan N
authors.initials: HN
authors.lastname: Ibrahim
mesh_terms: D000293:Adolescent; D000328:Adult; D000368:Aged; D004644:Emotions; D005260:Female; D017048:Health Care Costs; D005102:Health Expenditures; D006304:Health Status; D006801:Humans; D007348:Insurance, Health / Q000191:economics; D016030:Kidney Transplantation / Q000191:economics* / Q000523:psychology*; D019520:Living Donors / Q000523:psychology*; D008297:Male; D008875:Middle Aged; D009042:Motivation; D009392:Nephrectomy / Q000009:adverse effects / Q000401:mortality* / Q000523:psychology*; D011183:Postoperative Complications / Q000191:economics / Q000523:psychology / Q000628:therapy; D012307:Risk Factors; D012944:Social Support; D012959:Socioeconomic Factors; D011795:Surveys and Questionnaires; D013997:Time Factors; D016896:Treatment Outcome; D014481:United States; D061349:Unrelated Donors / Q000523:psychology*; D055815:Young Adult
keywords: cost of illness; emotions; kidney donation; living donors; motivation; quality of life; renal transplantation; social support; tissue donors; vulnerable populations