Racial differences in the living kidney donation experience and implications for education.

CONTEXT: Much has been written about the barriers to deceased organ donation in the African American community. However, relatively little research has been conducted on barriers to living donation among African Americans. A shortage of suitable deceased donor kidneys among African Americans has encouraged donation from living donors. OBJECTIVE: As a follow-up to several focus groups with health professionals about barriers to living donation and suggestions for educational interventions, we sought to determine kidney donors' thoughts and feelings about their donation. DESIGN: Telephone interviews with past donors. PARTICIPANTS: Nine African Americans and 9 whites were selected from a database of laparoscopic donor nephrectomies from 1993 to 2003. OUTCOME MEASURES: Transcribed phone interviews were reviewed by 3 researchers to determine recurring themes and categorize responses. RESULTS: Responses were categorized into 8 areas of concern: health, financial, life with 1 kidney, procreation, psychosocial matters, surgery related, success of the transplant, and concerns about the future. Whites (n = 9) tended to volunteer more for laparoscopic kidney donation than did African Americans (n = 2). African American concerns focused on future health and living with only 1 kidney, whereas whites had concerns about the surgery and the medical system. CONCLUSIONS: Findings indicated that education is the best way to reach living donors and dispell fears. Promoting general health of African Americans may increase their willingness to be a living donor. Altruistic motives are the main motivation for donation, and intervention programs should target groups on a personal level to help individuals see that they can make a difference in improving or saving lives.

Racial disparities in living kidney donation: is there a lack of willing donors or an excess of medically unsuitable candidates?

BACKGROUND: Live kidney donation is safe for healthy donors and an effective treatment for patients with end-stage renal disease. Many potential donors are referred for live kidney donation, but only a small percentage donate. This study aims to determine reasons for nondonation and establish if racial differences exist. METHODS: A retrospective database and chart review of all patients that were referred for potential live kidney donation from January 1, 2000 to December 31, 2004 was conducted. RESULTS: In all, 30.3% of referred potential live kidney donors were lost to follow-up. Primary reasons for nondonation (n=1,050) included unsuitable donor health (43.1%) and recipient-based causes (41.3%). Immunologic incompatibility accounted for 9.7% of all nondonations. Racial differences indicated more African Americans had incompatible blood types (P=0.01) or ineligible recipients (26.7% vs. 14.4%, P<0.01). More non-African Americans donated (13.2% vs. 4.6%, P<0.01) or were halted because the potential recipient received another organ (living/cadaveric) (20.0% versus 7.9%, P<0.01). Nondonation due to overall donor health (including diabetes and hypertension) did not differ between races, but subanalysis indicated more African American nondonation was due to high body mass index (P=0.01). CONCLUSIONS: Determining the reason behind nondonation is a first step towards understanding low rates of live kidney donation. More African American donor referrals are lost to follow-up while rates of other reasons were similar among races. This may indicate that African Americans are not more frequently medically unsuitable, but that the divergence in rates of live kidney donation is caused by a disparity in willingness to donate among African Americans.

Healthcare professionals' perceptions of the barriers to living donor kidney transplantation among African Americans.

The number of African Americans participating in living donations continues to remain low. Although researchers have identified multiple barriers to cadaveric donation, relatively little is known about barriers to living kidney donation among this population. We conducted three focus groups of healthcare professionals from a transplant center in South Carolina to determine their perceptions of barriers to living kidney donation among African Americans. An African-American and a Caucasian member of the project team facilitated the groups. Sessions were taped, transcribed and analyzed for key themes. Eighteen transplant professionals participated in the three focus groups, including physicians, transplant coordinators, pharmacists and a data coordinator. Analysis of the transcripts revealed the following perceived barriers to living kidney donation among African Americans: 1) pre-existing medical conditions, 2) financial concerns, 3) reluctance to ask family members and/or friends, 4) distrust of the medical community, 5) fear of surgery, and 6) lack of awareness about living donor kidney transplantation. In addition to previously described barriers to cadaveric donation, this study identified barriers unique to living donation, such as pre-existing medical conditions, financial concerns, reluctance to ask a living donor and fear of surgery.

Racial differences in coping with the need for kidney transplantation and willingness to ask for live organ donation.

BACKGROUND: Disparities in African-American live donor kidney transplantation continue to grow. How patients cope with the reality of end-stage renal disease and the ensuing need for dialysis or a kidney transplant may directly affect the course of their disease, quality of life, and willingness to ask for live kidney donation. Racial differences in coping may exist and relate to the willingness to ask for live kidney donation. METHODS: The Brief COPE and Living Organ Donor Survey instruments were administered prospectively to potential kidney transplant recipients. The 14 different coping mechanisms were analyzed by race to look for differences. Willingness to ask for live kidney donation was analyzed to look for possible correlations with coping mechanisms and possible predictors analyzed by means of logistic regression. RESULTS: Three hundred thirty-three potential kidney transplant recipients were administered the surveys, with 61% African Americans. Racial differences were seen in the following coping mechanisms: acceptance, humor, religion, denial, and behavioral disengagement. Although racial differences did not exist in overall willingness to ask for donation, positive coping strategies were related to increased willingness to ask for donation. CONCLUSION: African Americans cope with the need for a kidney transplant differently than non-African Americans. Potential African-American kidney recipients are more likely to deny the need for a transplant and are less accepting of their situation. This may affect their perception of the need for transplantation and their persuasiveness in asking for live donations. Transplant programs should ensure that counseling and education programs aim to modify unrealistic expectations and improve recipient coping skills.