Can Family Attributes Explain the Racial Disparity in Living Kidney Donation? S.L. Lunsford, K.S. Simpson, K.D. Chavin, K.J. Mensching, L.G. Miles, L.M. Shilling, G.R. Smalls, and P.K. Baliga ABSTRACT Background. Living donation is a safe, effective treatment for patients with end-stage renal disease (ESRD), yet rates of live kidney donation remain low. Potential transplant recipients may be more inclined to ask a family member for a living donation if they feel familial closeness. Methods. The FACES II and the Living Organ Donor Survey were administered to patients attending pretransplant education to assess individual perceptions of family structure and willingness to request a living kidney donation from a family member. Results. A total of 328 potential transplant recipients were included in the study: 200 (61%) African American and 128 (39%) Caucasian. Approximately half were willing to ask for a living donation. Individual’s perception of family cohesion, adaptability, and type as measured by FACES II showed most families were mid-range with optimal cohesion and adaptability. Family cohesion and adaptability showed no association with being willing to request a live donation, but those single/never married were only half as likely to ask for donation (odds Ratio [OR] 0.51; 95% confidence interval [CI] 0.31– 0.86, P ⫽ .01). Lower education ( ⫽ ⫺0.49) and unmarried status ( ⫽ ⫺0.31) predicted a lower cohesion score. Conclusion. Family type, cohesion, and adaptability showed no differences across race and was not related to the potential recipient’s willingness to ask for a live donation. Although responses by race did not differ, an important finding showed that only half of ESRD patients are willing to ask for a live organ donation, and those patients that were single/never married were less likely to ask for a living donation. Research surrounding this reluctance is warranted.
T
HE RATES of end-stage renal disease (ESRD) and the number of patients in need of a kidney transplant continue to grow at an alarming rate across the nation. There are currently 67,131 patients awaiting kidney transplantation based on data from the Organ Procurement and Transplantation Network (OPTN) as of June 2006.1 Though the demand for organs increases, the supply of suitable deceased donor kidneys remains small, resulting in increasing time on the transplant waiting list. Increases in the national transplant waiting list are markedly pronounced in African Americans. For patients listed in the United States during 2001 to 2002, the median waiting time for non-African Americans was 3.5 years compared to 5.0 years for African Americans as reported by OPTN.1 Studies of barriers to deceased donation in African Amer-
icans have indicated that lack of access to care, education, distrust of the medical system, religious myths, and racism may From the Division of Transplant Surgery, Department of Surgery, College of Medicine (S.L.L., K.D.C., G.R.S., P.K.B.), Department of Health Administration and Policy, College of Health Professions (K.S.S., L.M.S.), and Transplant Services, Medical University Hospital Authority (K.J.M., L.G.M.), Medical University of South Carolina, Charleston, South Carolina. This work was supported by a grant (R01DK62596) from the National Institute of Diabetes and Digestive and Kidney Diseases. Address reprint requests to Shayna L. Lunsford, MS, Division of Transplant Surgery, Department of Surgery, College of medicine, medical university of South Carolina, 151 Rutledge Ave 419B, P.O. Box 250807, Charleston, SC 29412. E-mail:
[email protected]
0041-1345/07/$–see front matter doi:10.1016/j.transproceed.2007.03.017
© 2007 by Elsevier Inc. All rights reserved. 360 Park Avenue South, New York, NY 10010-1710
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Transplantation Proceedings, 39, 1376 –1380 (2007)
RACE AND LIVING KIDNEY DONATION
be to blame.2–5 However, barriers to living organ donation in African Americans have not been well documented. National rates and previous studies have indicated that African Americans are less likely to become willing deceased or living kidney donors.6,7 Identifying reasons for this lack of willingness would be a first step in establishing ways to ameliorate the difference between the need for organs and the supply of compatible donors. Potential organ recipients may be reluctant to ask for a living donation. They may feel the request to be too great since it involves a surgical procedure or they may not believe life would be better with a new kidney. However, potential recipients may be more willing to request a living kidney donation from a family member if they feel a greater familial connection. How feelings of familial closeness relate to living kidney donation is of interest since potential recipients’ perception of family attributes may directly relate to their willingness to ask for a living donation. METHODS Participants and Setting After referral to the transplant center (located in a Southeastern teaching hospital), ESRD patients are required to attend the mandatory pretransplant education class prior to medical evaluation for transplant. The classes include basic information on the transplant center, the transplant process and waiting list, living donation, financial and insurance information, and a synopsis of life after transplant, including information on immunosuppression and beneficial lifestyle behaviors. Patients are required to attend an education class that is held at one of three geographic locations across the state of South Carolina. Patients are asked in advance to bring with them any family members that might be interested in becoming a live kidney donor. Prior to the initiation of the education session, survey packets are given to patients in a consistent manner by the same African-American administer at the various locations across the state. Data were collected from July 2003 through August 2004.
1377 developed as a survey instrument capable of measuring these dynamics10 and FACES II is an abbreviated portion of the survey. The FACES II survey instrument measures responses to 30 questions focusing on one’s perceived family dynamics to determine degrees of family cohesion, adaptability, and communication. Responses to questions are scored on a 5-point Likert scale with responses ranging from 1, indicating almost never; 2, once in awhile; 3, sometimes; 4, frequently; to 5, almost always. Family cohesion is defined by Olson as the emotional bonding that family members have toward one another. Four levels define this measure: disengaged (low cohesion), separated (low to moderate cohesion), connected (moderate to high cohesion), and enmeshed (high cohesion). The two extreme scale measures (disengaged and enmeshed) are viewed as problematic, whereas the two moderate levels (separated and connected) have optimal functioning of family relationships. Family adaptability is defined as the amount of change in its leadership, role relationships, and relationship rules. This dimension focuses on examining how families handle stability versus change. Levels range from rigid (low flexibility), structured (low to moderate flexibility), flexible (moderate to high flexibility), and chaotic (high flexibility). Similar to cohesion, the ideal levels of adaptability are the two moderate levels. Family communication is a function of the first two dimensions: cohesion and flexibility. This dimension focuses on listening skills, speaking skills, self-disclosure, clarity, continuity tracking, respect, and regard. Balanced families tend to be those with very good communication; conversely, unbalanced families have deficient communication.
Data Collection Prior to initiation of the pretransplant education class, ESRD patients were administered the FACES II and the LODS. An African-American member of the transplant education team administered the surveys.
Human Subjects’ Approval Survey Development Researchers at The Medical University of South Carolina developed a survey questionnaire (Living Organ Donor Survey [LODS]) to capture potential kidney recipients’ willingness to request a living donation and their concerns about live donation (Appendix 1). Focus groups with transplant personnel (including surgeons, physicians, pharmacists, and coordinators) and phone interviews with past donors were conducted to aid in survey development.8 Responses were measured on a 5-point Likert scale (1 indicates strongly disagree; 2, disagree; 3, not sure; 4, agree; and 5, strongly agree). Face and content validity were established by content experts. Factor analysis showed reliability, with survey questions loading on the same factors in repeated samples.
Family Structure: The Family Cohesion and Adaptability Evaluation Scale (FACES) The Circumplex Model of Marital and Family Systems was developed by David H. Olson as linkage among research, theory, and practice of family relationships.9 The model focuses on three main dimensions: family cohesion, flexibility, and communication. The Family Cohesion and Adaptability Evaluation Scale (FACES) was
The Medical University of South Carolina (MUSC) Institutional Review Board approved all aspects of this study including study design, patient selection, and survey instrumentation.
Statistical Methods All data were analyzed using SAS statistical software, version 9.1 (SAS Institute, Cary, NORTH CAROLINA). Willingness to request live donation was analyzed by race. The question “I am willing to ask a family member to donate a kidney” was scored to evaluate willingness to request donation, and a response of “agree” or “strongly agree” classified the respondent as “willing to ask.” Demographic information was categorized and analyzed. The FACES II survey was scored and chi-square analysis was used to look for differences. Linear regression checked for significance of demographic variables that may be associated with family behavior. Stepwise logistic regression was used to look for possible associations of family dynamics and demographics with willingness to be a live kidney donor. A significance level of 0.30 was required to allow a variable into the model, and a significance level of 0.35 was required for a variable to stay in the model.
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LUNSFORD, SIMPSON, CHAVIN ET AL Table 2. Responses to Selected Questions
Table 1. Demographics of Potential Kidney Transplant Recipients
Gender Male Female Marital status Married Not Married Education High school maximum ⬎ High school Income ($) ⬍20,000 ⱖ$20,000 Mean immediate family size Mean age in years
African American
Caucasian
200 (61.2)
128 (38.8)
I am willing to ask a family member to donate a kidney
P Value
.80 106 (53.0) 94 (47.0)
66 (51.6) 62 (48.4)
120 (60.0) 80 (40.0)
88 (68.8) 40 (31.3)
.11
126 (63.0) 74 (37.0)
65 (50.8) 63 (49.2)
.03
98 (49.0) 102 (51.0) 7.9 (3.9) 50.5 (11.8)
40 (31.3) 88 (68.8) 5.9 (4.8) 50.1 (13.7)
⬍.01
No Undecided Yes
African American
Caucasian
P Value
43 (21.5) 60 (30.0) 97 (48.5)
21 (16.4) 36 (28.1) 71 (55.5)
.39
I think that I would have a better life with a new kidney
⬍.01 .78
RESULTS Subject Characteristics
A total of 328 potential kidney transplant recipient’s were included in the study (Table 1). The sample was composed of 200 (61.2%) African Americans and 127 (38.8%) Caucasians. Other races were excluded due to small numbers (⬍0.01%). The distribution of gender and age was similar among races. Most patients were married. Significantly more African Americans had obtained at most only a high school education and had an annual household income ⱕ$20,000. The mean family size of Caucasians (5.9) was smaller than that of African Americans (7.9). Individual perceptions of family cohesion, adaptability, and type as measured by FACES II indicated that the
No Undecided Yes
African American
Caucasian
P Value
18 (9.0) 7 (3.5) 175 (87.5)
5 (3.9) 5 (3.9) 118 (92.2)
.21
majority of families were mid-range type and had optimal adaptability and cohesion (Fig 1). No racial differences were seen. The results of selected questions regarding donation are reported in Table 2. Although responses by race did not differ, an important finding showed that approximately half of ESRD patients are willing to ask for a live organ donation. Results of the linear regression of cohesion and adaptability scores are shown in Table 3. Being not married ( ⫽ ⫺0.49; P ⫽ .03) and having only a maximum of a high school education ( ⫽ ⫺0.31; P ⫽ .02) predicted a lower family cohesion score. No variables were significantly associated with total adaptability score. Interaction terms were tested but did not reach significance and were not included in the final model. Results of the logistic regression indicated that neither adaptability score nor cohesion score was associated with being a willing donor. Stepwise logistic regression, including these variables as well as demographics, illustrated that the only variable associated with being willing to ask for a living donation was marital status, with patients reporting single/ never married status (compared to divorced, living together, married, separated, and widowed) being half as
Table 3. Results of Linear Regression and Demographic Variables for Total Cohesion and Adaptability Scores
Fig 1.
FACES II survey results.
Cohesion Female Not married High school education max White Poor Family size Adaptability Female Not married High school education max White Poor Family size

P Value
⫺0.08 ⫺0.49 ⫺0.31 0.09 ⫺0.56 0.02
.66 .03 .02 .68 .01 .43
0.07 ⫺0.05 ⫺0.25 ⫺0.33 ⫺0.52 0.02
.71 .79 .20 .09 .01 .29
RACE AND LIVING KIDNEY DONATION
likely to ask for a live donation (OR 0.51; 95% CI [0.31– 0.86]; P ⫽ .01). CONCLUSION
African Americans continue to be less likely than nonAfrican Americans to receive donor kidneys even though they have a greater prevalence of ESRD and an increased need for kidney transplantation. This results in a markedly pronounced waiting time on the transplant list for African Americans. Efforts targeting live organ donation may help to decrease this disparity. However, information concerning barriers to living donation in the African American community is lacking. One’s perceived family closeness may play a role in the potential kidney transplant recipient’s willingness to request a live donation from a family member. However, results from this study did not support our suggested hypothesis. Additionally, our analysis did not indicate any significant differences by race in terms of the potential donor’s assessment of family cohesion, adaptability, and related family type as measured by the FACES II scale. These variables also were not related to willingness to ask for a live donation, indicating the continued need for research as to what factors influence reluctance to request a live donation. Although neither adaptability score nor cohesion score was associated with being able to request a live donation, patients reporting single/never married status (compared to divorced, living together, married, separated, and widowed) were half as likely to ask for a live donation (OR 0.51; 95% CI [0.31– 0.86]; P ⫽ .01). This finding suggests an intervention strategy that may increase living donation in unmarried patients: Such patients should be educated on the wide pool of potential donors outside of the family and spouse, and their means of adaptability should be promoted. Generally speaking, increasing family communication among families of those with ESRD may enhance live donation rates. Non-African Americans are much more likely than African Americans to discuss organ donation (64% vs 44%, respectively).11 Studies show that family relationships with realistic and modest expectations would facilitate positive psychological effects in living related kidney transplantation.11 Improving communication among family members can also increase the family’s ability to deal with stress. Oftentimes, when family members learn to be more assertive in expressing feelings, wants, and desires in a constructive manner, families are better equipped to deal with stressful situations (such as the need for transplantation). The general hypothesis derived from the Circumplex model indicates that balanced families function more adequately, have better communication, and will be better equipped to deal with situational stress.9 Our data indicated that approximately 20% of those surveyed were classified as having balanced family types. The vast majority (70%) were considered mid-range and 10% were extreme.
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Dealing with ESRD and the need for a kidney transplant acts as a stressor on each family.12–14 Those families who are confronted with stress may tend to become increasingly rigid and inflexible, which may be reflected in our sample since very few were considered “balanced.” Promoting problem-solving skills and democratic decision-making skills in these families is thought to be beneficial. The most impressive finding resulting from this study is the low rate of ESRD patients in need of a transplant who are willing to ask for a live donation from a family member. Only about 51% are willing to ask for a donation while approximately 30% remain undecided and 20% are unwilling. Given the well-documented success, cost-effectiveness, and increase in quality of life of transplantation,15,16 patient desire for transplantation seems logical. Thus, if patients desire transplantation, the question remains as to why only half are willing to request a donation. Patients who are sick with ESRD often suffer from depression,17,18 and this may result in decreased feelings of self-worth. They may feel they are not worth the inconvenience and risk (although small) to the donor. Such feelings may make the potential recipient reluctant to ask for a live donation, and further research into this area is deemed warranted. Results of this study are limited because this study was based on one sample in a single geographic location. The LODS survey has not been validated by repeated samples or by other researchers, but was used as an exploratory tool in our study. ACKNOWLEDGMENT This study was supported by grant DK62596-02 from the National Institute of Diabetes and Digestive and Kidney Diseases: A Program to Increase Living Donations in African Americans.
APPENDIX 1. LIVING ORGAN DONOR SURVEY PATIENT SURVEY
Please rate the following statements based on how strongly you agree or disagree with them. Circle your response. Your information will be kept confidential. We will use this information to help us serve you and others. A ⫽ strongly disagree, B ⫽ disagree, C ⫽ not sure, D ⫽ agree, E ⫽ strongly agree A B C D E 1. I think that I would have a better life with a new kidney. A B C D E 2. I have family members. (If “B” selected, go to question 5.) A B C D E 3. I know of family members who would be interested in donating a kidney. A B C D E 4. I am willing to ask a family member to donate a kidney. A B C D E 5. I have friends. (If “B” selected, go to question 8.) A B C D E 6. I know of friends that would be interested in donating a kidney.
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A B C D E 7. I am willing to ask a friend to donate a kidney. A B C D E 8. I would accept a kidney from someone I don’t know. I have concerns about asking anyone to donate a kidney because A B C D E 9. It is a big sacrifice. A B C D E 10. It requires time away from family responsibilities. A B C D E 11. It would make me feel guilty. A B C D E 12. It requires surgery. A B C D E 13. It includes care from unfamiliar doctors. A B C D E 14. There is a possibility the doctor might not be trustworthy. A B C D E 15. There is a possibility the hospital will make a mistake. A B C D E 16. It leaves the donor with only one kidney. A B C D E 17. It requires that the donor be in good health. A B C D E 18. It may affect the donor’s sexual activity. A B C D E 19. It may affect the donor’s ability to have children. (Applicable to males also.) A B C D E 20. There is a possibility of death. A B C D E 21. It might cause financial strain. A B C D E 22. It might cause pain. A B C D E 23. It will cause scarring. A B C D E 24. The donor might get sick. A B C D E 25. My health may not improve as a result of the donation. A B C D E 26. It is against certain religions. A B C D E 27. It requires time away from work.
REFERENCES 1. Data query, June 21, 2006. Organ Procurement and Transplantation Network. (http://www.OPTN.org)
LUNSFORD, SIMPSON, CHAVIN ET AL 2. Minniefield WJ, Yang J, Muti P: Differences in attitudes toward organ donation among African Americans and whites in the United States. J Natl Med Assoc 93:372, 2001 3. Creecy RF, Wright R, Berg WE: Discriminators of willingness to consider cadaveric kidney donation among black Americans. Soc Work Health Care 18:93, 1992 4. Callendar CO, Hall LE, Yeager CL, et al: Organ donation and blacks. A critical frontier. N Engl J Med 325:442, 1991 5. Johnson LB: Some of the challenges of encouraging organ donation among minority populations. N C Med J 65:35, 2004 6. National Kidney Foundation: Americans recognize organ shortage, support animal to human transplants, new survey says. Available at http://www.kidney.org/news/animazman.shtml. Accessed December 1, 2005 7. Trollinger J, Flores J, Corkill JK, et al: Increasing living kidney donation in African Americans. Transplant Proc 29:3748, 1997 8. Shilling LM, Norman ML, Chavin KD, et al: Healthcare professionals’ perceptions of the barriers to living donor kidney transplantation among African Americans. J Natl Med Assoc 98:834, 2006 9. Olson DH: Circumplex model of family systems: family assessment and intervention. In Olson DH, Sprenkle DH, Russell CRS (eds): Circumplex Model: Systemic Assessment and Treatment of Families. New York: Haworth Press; 1989, p. 7 10. Olson D, Bell R, Portner J: Family Inventories Manual. Minneapolis, MN: Life Innovations, 1992 11. Heck G, Schweitzer J, Seidel-Wiesel M: Psychological effects of living related kidney transplantation—risks and chances. Clin Transplant 18:716, 2004 12. Kelly M, Tibbles R: Counselling should be offered to people with end-stage renal failure. Edtna Erca J 30:31, 2004 13. Binkley L: Caring for renal patients during loss and bereavement. Edtna Erca J 25:45, 1999 14. Campbell AR: Family caregivers: caring for aging end-stage renal disease partners. Adv Ren Replace Ther 5:98, 1998 15. Laupacis A, Keown P, Pus N, et al: A study of the quality of life and cost-utility of renal transplantation. Kidney Int 50:235, 1996 16. Ojo AO, Port FK, Wolfe RA, et al: Comparative mortality risks of chronic dialysis and cadaveric transplantation in black end-stage renal disease patients. Am J Kidney Dis 24:59, 1994 17. Drayer RA, Piraino B, Reynolds CF 3rd, et al: Characteristics of depression in hemodialysis patients: symptoms, quality of life and mortality risk. Gen Hosp Psychiatry 28:306, 2006 18. Rabindranath KS, Daly C, Butler JA, et al: Psychosocial interventions for depression in dialysis patients. Cochrane Database Syst Rev CD004542, 2005