SEARCH

SEARCH BY CITATION

Keywords:

  • Living kidney transplantation;
  • communication;
  • families;
  • patient-physician discussion

Abstract

  1. Top of page
  2. Abstract
  3. Introduction
  4. Methods
  5. Results
  6. Discussion
  7. Acknowledgment
  8. References

It is unknown whether patient-physician discussion about live kidney transplantation (LT) among African Americans (AA) is affected by preferences, knowledge and family discussions regarding LT. We recruited 182 AA dialysis patients and their families and assessed the relation of preferences, knowledge and family discussions regarding LT to the occurrence of patient-physician discussion using multivariable logistic regression. Most patients (76%) desired a transplant, and most patients (93%), spouses (91%) and children (88%) had knowledge of LT. Nearly half of the families discussed transplantation. Only 68% of patients and less than half of their spouses (41%) and children (31%) had discussed transplantation with physicians. Patient-physician discussion was more common among patients: whose spouses acknowledged their interest in transplantation (adjusted odds ratio (AOR) (95% CI):3.5 (1.61–7.8)); who discussed transplantation with spouses (AOR(95% CI):5.25 (2.22–12.41)); whose spouses agreed that they discussed transplantation with patients (AOR (95%CI):5.20 (1.76–15.37)) and whose children discussed transplantation with patients' physicians (AOR (95%CI):7.4 (1.3–40.0)). Universal patient-physician discussion of LT does not occur despite patient preferences. Rates of family-physician discussions are low, and rates of family discussions vary. Early family-physician discussion of LT, use of allied health professionals to promote family discussion of LT and the institution of culturally appropriate programs to enhance discussion of LT in AA families could improve rates of discussion and enhance patients' access to LT.


Introduction

  1. Top of page
  2. Abstract
  3. Introduction
  4. Methods
  5. Results
  6. Discussion
  7. Acknowledgment
  8. References

While the public health burden of chronic kidney disease (CKD) is substantial for the entire U.S. population (more than 10 million adults having some kidney damage (serum creatinine levels ≥1.5 mg/dL) and more than 400 000 persons with end-stage renal disease (ESRD)), certain ‘high-risk’ groups of persons bear the burden of the CKD more heavily than others (1–4). Over the past 20 years, African Americans have consistently had CKD and ESRD incidence and prevalence rates 4–6 times greater than those of their White counterparts after adjustment for age and gender (5).

Ethnic/racial (terms describing both cultural and biological heritage; henceforth used interchangeably) (6,7) disparities in the burden of CKD are exacerbated by ethnic/race disparities in the receipt of kidney transplantation in the United States, with persistent trends over the past 10 years demonstrating African Americans are less likely to receive kidney transplants than Whites (8,9). Lower rates of kidney transplantation for African Americans compared to Whites have been attributed to a variety of reasons, including immunological incompatibility of deceased donor kidneys, lower rates of referral of African Americans for transplantation, less access to health care and less desire on the part of African Americans for kidney transplantation (10–18). Disproportionately high rates of ESRD among African Americans and improved outcomes for persons receiving kidney transplantation magnify the need to identify potentially modifiable barriers to the receipt of transplantation for African Americans (19,20).

Live kidney transplantation (LT) not only offers improved outcomes over deceased donor transplantation but may also bypass certain barriers to transplantation for African Americans on dialysis, including immunological incompatibility issues and longer waiting times typically experienced for African Americans on the deceased donor kidney waiting list (21,22). Despite technological improvements in the live donor transplant procedure and widely publicized successes of LT, African Americans with ESRD continue to trail behind their Caucasian American counterparts with respect to the receipt of LT (16,20,23–27).

Patient-physician discussion about transplantation and LT as a treatment option for dialysis patients, represents a key step in the process of obtaining LT. While not all patients on dialysis are clinically suitable for or desire transplantation, universal discussion of transplantation provides a mechanism through which patients and their physicians can address patients' treatment preferences and suitability openly. When patients are clinically suitable and desire transplantation, discussion might also facilitate access to LT. In many dialysis networks, health care providers' documentation of universal discussion of clinical options for transplantation, including LT, is strongly encouraged (28,29).

While prior studies have shown that African Americans are less likely to discuss transplantation with physicians when compared to their White counterparts, little is known about how patient and family knowledge of LT and patterns of patient, physician and family communication regarding LT influence patient-physician discussions of LT (14). Because the receipt of LT depends not only on patients' desires for LT but also on the identification of willing potential donors (especially family members), improved understanding of factors which may affect patient, family and physician involvement in discussions regarding LT, may shed light on ways in which LT may be increased in African Americans.

In a study of African American dialysis patients and their families, we assessed the relation of patient preferences, patient and family knowledge of LT and patient-family discussion of LT with patient-physician discussion of LT.

Methods

  1. Top of page
  2. Abstract
  3. Introduction
  4. Methods
  5. Results
  6. Discussion
  7. Acknowledgment
  8. References

Study participants and data collection

As part of a family investigation of nephropathy genes in African American dialysis patients (the Family Investigation of Nephropathy and Diabetes study), we performed a cross-sectional study of 182 African American prevalent dialysis patients with no prior history of transplantation, their spouses/partners (n = 182) and their related children (n = 81) in Maryland, Pennsylvania and Tennessee from August 2001 to December 2003. Patients were recruited from dialysis units during their dialysis sessions by study staff. Patients who agreed to participate in the study identified their spouses/partners and children who might also be interested in participation. Patients' spouses/partners (henceforth referred to as ‘spouses’) were defined as patients' current significant others who might or might not be living with patients at the time of the survey. Children were defined as patients' adult children (age 18 years or older) from current or past marriages/partnerships.

Using a standardized questionnaire, we asked patients and their families questions about: (i) patients' preferences and expressed interest regarding LT, (ii) patients' and their families' knowledge of LT as a treatment option for dialysis patients, (iii) the occurrence of discussions regarding LT among family members and (iv) patients' and families' discussions regarding LT with patients' physicians or health care providers (henceforth termed ‘physicians’) (Table 1). These questions were based on previously validated questions posed in a regional study of racial differences in preferences regarding transplantation (14). We also asked study participants to report their demographic characteristics (age, gender, education, employment) and whether they had been told by a doctor that they had any of the following conditions: hypertension, diabetes, congestive heart failure, high cholesterol, myocardial infarction, balloon angioplasty or bypass surgery and stroke or transient ischemic attack. Questionnaires were administered separately to patients, spouses and children via telephone or in-person interviews, and they were completed by study participants independently from other family members involved in the study. The study protocol and questionnaire were approved by the Johns Hopkins Medicine Institutional Review Board.

Table 1.  Questions posed to patients, spouses and children in separate standardized questionnaires* regarding patient preference for transplantation, patient-family knowledge and patient-family discussions regarding transplantation
Question asked [answers possible]Study participant
PatientSpouseChild
  1. *All questionnares completed independent from other fmily members.

  2. •†Indicates question posed to study participant in their questionnaire.

Patient preference and expressed interest for transplantation
 Do you wish to have a kidney transplant?[yes/no]•†
 Has your spouse/parent ever expressed an interest in receiving a kidney transplant?[yes/no] 
Knowledge regarding living related transplantation
 Do you think a living person can donate a kidney to a person on dialysis [yes/no]?
Discussion regarding living-related transplantation among family members
 Have you ever discussed options for a living-related kidney transplant with your spouse?[yes/no] 
 Have you ever discussed options for a living-related kidney transplant with your child?[yes/no]
 Have you ever discussed living-related kidney donation with your partner/spouse?[yes/no] 
 Have you ever discussed the possibility of donating your kidney to your parent?[yes/no] 
Discussion regarding living-related transplantation with patient's physician or health care provider
 Have you ever discussed options for a living-related kidney transplant with your physician or health care provider?[yes/no] 
 Have you discussed living-related kidney donation with your spouse's/parent's physician or health care provider?[yes/no] 

Statistical analysis

We used descriptive statistics to quantify patients' and their families' reports of patients' preferences and expressed interest regarding transplantation, patients' and their families' knowledge regarding LT and the occurrence of patient-family, patient-physician or family-physician (for spouses and children) discussion regarding LT. Using bivariate (chi square) analysis and multivariable logistic regression models (controlling for age, gender, education and employment status of patients, spouses and their children), we assessed the unadjusted and independent relation of patient preferences, patient/family knowledge regarding LT, occurrence of patient-family discussion regarding LT and occurrence of family-physician discussion regarding LT with the occurrence of patient-physician discussions regarding LT. In these models, predictor variables (e.g. patient preferences, patient knowledge of LT, family knowledge of LT, patient-family discussion of LT) were each included in separate models, which included potential confounders (patient and family age, gender, education, employment status). To ascertain whether the presence of medical conditions in patients' spouses and children (which could preclude their abilities to become live kidney donors) affected rates of patient-physician discussion of LT, we performed a sensitivity analysis in which we used both stratified logistic regression models and interaction terms to ascertain whether rates of discussion differed in families where medical conditions of spouses and children were present versus families where no medical conditions were present in spouses or children. Analyses were performed using STATA Statistical Software: Release 8.0 (Stata Corporation, College Station, TX).

Results

  1. Top of page
  2. Abstract
  3. Introduction
  4. Methods
  5. Results
  6. Discussion
  7. Acknowledgment
  8. References

Participant characteristics

Study participants included 182 African American patients, 182 spouses and 81 children. Patients were similar in age, gender and employment status when compared to national data on African American dialysis patients (20). A majority of patients were male (63%), had at least high school education (60%), were disabled or unemployed (65%) and were receiving hemodialysis (91%) (Table 2). The median (interquartile range) time on dialysis for patients was 3 years (1–5). Most patients (92%) reported that they had been told by a doctor or other physicians, that they have hypertension, over a third (39%) had been told that they have diabetes and nearly a third (38%) had been told that they have high cholesterol. Less than a quarter of patients reported having had or been told that they had congestive heart failure, myocardial infarction, balloon angioplasty or bypass surgery or stroke or transient ischemic attack. Most spouses were female (63%), had at least high school education (70%) and nearly half were employed full time (45%). Nearly half (46%) of spouses had been told they have hypertension, and nearly a third (30%) had been told that they have high cholesterol, but few reported other chronic illnesses. Most children were female (62%), had at least high school education and were employed full time (59%). Less than a quarter (22%) of children had been told that they have hypertension and few reported other chronic illnesses (Table 2).

Table 2.  Participant demographic and medical characteristics
CharacteristicStudy participants
Patient (N = 182)Spouse (N = 182)Child (N = 81)
  1. *Percentages may not add up to 100% due to missing values.

  2. na = not applicable

Age, years [mean (SD)] 53.8 (13.1)52.4 (13.7)31.9 (10.9)
Gender, n (%)*Male114 (63)68 (37)30 (37)
Female68 (37)114 (63)50 (62)
Education, n (%)*Less than high school education72 (40)55 (30)14 (17)
At least high school education110 (60)127 (70)67 (83)
Employment, n (%)*Disabled or unemployed118 (65)36 (20)14 (17)
Employed full time17 (9)81 (45)48 (59)
Employed part time, retired or home maker46 (25)51 (28)8 (10)
Type of dialysis, n (%)*Hemodialysis165 (91)nana
Peritoneal dialysis17(9)nana
Smoking status, n (%)*Current smokers65 (36)65 (36)21 (26)
Informed by doctor they have had
 the following medical conditions, n (%)*Hypertension168 (92)84 (46)18 (22)
Diabetes71 (39)19 (10)7 (9)
Congestive heart failure49 (27)3 (2)0 (0)
High cholesterol69 (38)55 (30)8 (10)
Myocardial infarction22 (12)5 (3)0 (0)
Balloon angioplasty or bypass surgery22 (12)4 (2)0 (0)
Stroke or transient ischemic attack23 (13)6 (3)0 (0)

Patient preferences/expressed interest, family knowledge and family discussion regarding LT

Of all patients, 139 (76%) stated they desired a kidney transplant and the majority (n = 118, 86%) of these were at least 75% certain of their desire. More than half of patients' spouses (62%) and children (53%) reported that the patient had previously expressed interest in transplantation to them (Table 3). Most patients (93%), spouses (91%) and children (88%) had knowledge of LT as a treatment option for dialysis patients. Patients reported that they had discussed transplantation with their spouses and children in approximately 45% and 53% of families, respectively. Similarly, patients' spouses and children reported that they had discussed transplantation with patients in approximately 60% and 62% of families, respectively (Table 3). Within families, patients and spouses both agreed they had discussed transplantation with each other in 57 (31%) families and patients and children both agreed they had discussed transplantation with each other in 33 (41%) families with children. In bivariate analysis, patients aged 18–34 years, 35–49 years and age 50–64 years were more likely than persons aged 65 years or older to report that they desired a kidney transplant (n (%): 11 (92%), 52 (84%), 49 (82%) and 13 (45%), respectively, p < 0.001). Patients who were employed full time were most likely to report they desired a transplant when compared to those who were disabled/unemployed or those who classified themselves as employed part time, retired, homemakers or other (n (%): 15 (88.2%) vs 95 (81.2%) and 28 (62.2%), respectively, p = 0.012). Desire for transplant was not associated with patient knowledge of LT as a treatment option, patient education or patients' reports that they had discussed LT with their spouses or their children.

Table 3.  Patient preferences and expressed interest regarding transplantation, family knowledge regarding living-related kidney transplantation and family discussion about living-related kidney transplantation
 ResponseStudy participant
Patient (N = 182) n (%)*Spouse (N = 182) n (%)*Child (N = 81) n (%)*
  1. *Percentages may not add up to 100% due to missing values.

  2. Greater missing values with this question may be present because not all patients enrolled in the study had chldren. Of those with children enrolled in this study, 84% of patients responded.

  3. na = not applicable.

Patient preference and expressed interest regarding transplantation
 Do you wish to have a kidney transplant?Yes139 (76)nana
No41 (23)nana
 Has your spouse/parent ever expressed an interest in receiving a kidney transplant?Yesna112 (62)43 (53)
Nona59 (32)33 (41)
Knowledge regarding living related transplantation
 Do you think a living person can donate a kidney to a person on dialysis?Yes169 (93)166 (91)71 (88)
No10 (6)7 (4)4 (5)
Discussion regarding living-related transplantation among family members
 Have you ever discussed options for a living-related kidney transplant with your spouse?Yes83 (46)nana
No65 (36)nana
 Have you ever discussed options for a living-related kidney transplant with your child?Yes76 (41)nana
No69 (38)nana
 Have you ever discussed living-related kidney donation with your partner/spouse?Yesna109 (60)na
Nona64 (35)na
 Have you ever discussed the possibility of donating your kidney to your parent?Yesnana50 (62)
Nonana26 (32)

Prevalence and predictors of patient-physician, family-physician and family discussion of LT

Nearly two thirds (68%) of patients reported that they had discussed LT with their physicians, but less than half of spouses (41%) and children (31%) reported discussing LT with patients' physicians. There was no statistically significant difference in rates of patient-physician or family-physician discussion of LT between families where patients reported that they desired transplantation versus families where patients reported that they did not desire transplantation (Figure 1).

image

Figure 1. Percentage of family members who report having discussion regarding living-related kidney transplantation with patients' physicians or healthcare providers according to whether patients desire transplantation.

Download figure to PowerPoint

Patient-physician discussion of LT was associated with family members' reports that patients expressed interest in receiving a kidney transplant, family discussion of LT and family-physician discussion regarding LT (Table 4). Patients whose spouses reported that their partners, had previously expressed interest in receiving a kidney transplant were statistically significantly more likely (3-fold greater odds) to report patient-physician discussion of LT when compared to patients whose spouses did not report their partners were interested in receiving a kidney transplant (adjusted percentage (95% CI): 79 (71–87) vs 55 (41–68), respectively, p < 0.01). Patients who reported that they had discussed LT with their spouses were statistically significantly more likely (5-fold greater odds) to report patient-physician discussion of LT when compared to patients who had not discussed LT with their spouses (adjusted percentage (95% CI): 85 (75–92) vs 52 (38–65), respectively, p < 0.01). Similarly, when patients and their spouses both acknowledged that they had discussed transplantation with each other, patients were statistically significantly more likely (5-fold greater odds) to report patient-physician discussion of LT, when compared to patients in families where patients and their spouses did not dually acknowledge that they had discussed transplantation or families where patients and their spouses both acknowledged that they had not discussed LT with each other (adjusted percentage (95% CI): 84 (72–92) vs 68 (53–80) and 49 (31–67), respectively, p < 0.01). Finally, patients whose children reported that they had previously discussed LT with their parent's physician were statistically significantly more likely (7-fold greater odds) to report patient-physician discussion of LT when compared to patients whose children had not discussed LT with their parent's physician (adjusted percentage (95% CI): 90 (69–98) vs 53 (35–69), p < 0.01, respectively). Patient demographic characteristics and patient and family knowledge about transplantation as a treatment option were not associated with patients-physician discussion of LT (Table 4).

Table 4.  Relation between different factors and patient-physician discussion of transplantation
FactorsTotal NPatient-physician discussion of live transplantation
n** Unadjusted percentageAdjusted* percentage (95% CI) Adjusted odds ratio (95% CI)
  1. aSingle model incorporating all patient demographics simultaneously.

  2. bModel adjusted for patient demographics (age, gender, education and employment status).

  3. cModel adjusted for patient demographics (age, gender, education and employment status) plus demographics of spouse (in models of variables reported by patients' spouses).

  4. dModel adjusted for patient demographics (age, gender, education and employment status) plus demographic. characteristics of child (in models of variables reported by patients' children).

  5. *Adjusted percentage represents frequency of patient-physician discussion in patients/families with and without factor as if the demographics of persons with and without factor were similar.

  6. Statistically significant trend (p < 0.01).

  7. ††Statistically significant trend (p = 0.02).

  8. **n = number of patients in each category who reported having discussed live transplantation with their physicians.

  9. ***Not able to calculate due to no reference group.

  10. Includes persons employed part time, retired and home makers.

  11. –No participants in this category.

Patient demographicsa
 Age18–34 years12107582 (49–95)1.0 (reference)
35–49 years61416967 (55–78)0.45 (0.09–2.32)
50–64 years67437073 (62–83)0.56 (0.11–2.95)
65 years and greater32205962 (45–77)0.30 (0.05–1.79)
 GenderaMale112787071 (61–79)1.0 (reference)
Female68466869 (57–79)0.85 (0.43–1.69)
 EducationaLess than high school72466465 (53–76)1.0 (reference)
At least high school108787273 (63–81)1.41 (0.72–2.77)
 EmploymentaDisabled or unemployed117786767 (57–75)1.0 (reference)
Employed full time17148293 (65–99)6.44 (0.81–51.5)
Other45316969 (54–81)1.25 (0.54–2.91)
Patient preference/interest for transplant
 Patient desire for transplantbDoes not desire transplant41256163 (47–76)1.0 (reference)
Desires transplant136997172 (64–79)1.51 (0.67–3.37)
 Spouse reports patient expressed interestcPartner did not express interest58305255 (41–68)1.0 (reference)
Partner expressed interest111877879 (71–87)3.5 (1.61–7.8)
 Child reports patient expressed interestdParent did not express interest33195864 (42–81)1.0 (reference)
Parent expressed interest46316769 (51–84)1.89 (0.48–7.51)
Family knowledge of LT
 Patient knowledgebNot aware1055050 (22–78)1.0 (reference)
Aware1691187071 (63–77)2.02 (0.54–7.63)
 Spouse knowledgecNot aware757172 (32–93)1.0 (reference)
Aware1641136971 (63–78)0.63 (0.10–3.96)
 Child knowledgedNot aware55100******
Aware73446063 (48–77)***
Family discussion regarding LT
 Patient discussion with spousecDid not discuss64314852 (38–65)1.0 (reference)
Discussed82698485 (75–92)5.25 (2.22–12.41)
 Patient discussion with childdDid not discuss24166777 (48–92)1.0 (reference)
Discussed43276367 (46–84)0.59 (0.12–2.86)
 Spouse discussion with patientcDid not discuss64406363 (51–74)1.0 (reference)
Discussed107787376 (66–84)1.72 (0.83–3.59)
 Child discussion with patientdDid not discuss26155865 (41–83)1.0 (reference)
Discussed53356668 (50–82)1.22 (0.31–4.83)
 Patient and spouse agreement regarding discussion with each othercAgree they did not discuss LT with each other31154849 (31–67)1.0 (reference)
Do not agree51326368 (53–80)2.03 (0.74–5.57)
Agree they both discussed LT with each other56478484 (72–92)5.20 (1.76–15.37)
 Patient and child agreement regarding discussion with each otherdAgree they did not discuss LT with each other37225968 (46–84)1.0 (reference)
Do not agree000
Agree they both discussed LT with each other33216468 (45–84)0.99 (0.26–3.75)
Family-physician discussion regarding LT
 Spouse-physician discussioncDiscussion did not occur98646466 (55–75)1.0 (reference)
Discussion occurred73547478 (66–86)1.76 (0.83–3.72)
 Child-physician discussiondDiscussion did not occur52275253 (35–69)1.0 (reference)
Discussion occurred27238590 (69–98)††7.41 (1.34–40.06)††

Effect of spouses' and children's medical conditions on patient-physician discussion of LT

In sensitivity analyses investigating the effect of medical conditions which might affect patients' spouses' and children's abilities to donate a live kidney, patients reported having discussed LT with their physicians in 67% of families where their spouses and children reported having no medical conditions that could preclude them from becoming live kidney donors. All other results were similar to main findings, indicating the presence of medical conditions in family members did not impact rates of patient-physician discussion of LT.

Discussion

  1. Top of page
  2. Abstract
  3. Introduction
  4. Methods
  5. Results
  6. Discussion
  7. Acknowledgment
  8. References

Given disparities in African Americans' access to deceased donor kidney transplants, one might assume patient-physician discussion of LT as a treatment option would be universal for African American dialysis patients. In this study of 182 African American dialysis patients and their families, we found that, although most patients desire transplantation and although knowledge of LT among patients and their families is common, patient-physician discussion of LT is not universal, rates of family-physician discussion regarding LT are low and rates of family discussion regarding LT vary among family members. Family recognition of patients' interests in receiving a kidney transplant, patient-family discussions regarding LT and family-physician discussions regarding LT were associated with greater rates of patient-physician discussion of LT.

Our data indicate that even when African American patients report that they desire transplantation, patient-physician discussion does not occur in nearly one-third of cases. These results are consistent with previous findings of less than the optimal rates of discussion of transplantation between African American patients and their physicians in a regional study of dialysis patients (14). Suboptimal rates of patient-physician communication represent a potentially modifiable barrier to disparities in the receipt of transplantation for Africans Americans. Reasons for suboptimal patient-physician discussion could include patients' distrust of physicians or fear of surgical procedures and patients' subsequent reluctance to ask about new therapeutic options, physicians' assumptions that patients are not interested in transplantation and patients' or physicians' perceptions that patients are not medically suitable for LT (13,24,30–32). In a recent regional study of nephrologists caring for African American and White dialysis patients, over one-third of nephrologists perceived difficulties in patient-physician communication or trust as a potential contributor to ethnic/race disparities in the receipt of transplantation (33). The magnitude of potential improvement in LT rates for African Americans with greater patient-physician discussion is unclear. However, there is mounting evidence that improvements in patients' trust of health providers, patient-physician communication and participatory decision making in the patient-physician relationship can enhance patients' understanding of risks and benefits of potential therapies (34). Such improvements could help patients make informed treatment decisions that are most compatible with their preferences, leading to greater satisfaction with outcomes (35–37).

Our results confirm the importance of family participation in discussions regarding LT and reflect the complex nature of patient decisions pertaining to LT. Because LT involves the identification of eligible donors for transplantation as well as the decision to undergo a major surgical procedure, discussion of LT with close family members (particularly spouses, who may not only serve as potential donors, but may also provide important social and emotional support for patients) may not only help patients finalize decisions regarding LT and facilitate the transplantation process, but may also help with improvement of clinical outcomes following transplantation (38–41). However, for some families, the ethical complexities of LT may interfere with discussion of LT. Prior studies have demonstrated that family discussions about LT can have psychological consequences, including depression and family conflict (42).

While patterns of family discussion regarding LT are likely to be heterogeneous, in some cases, patients, their family members and patients' physicians may shy away from family discussion of LT to avoid perceived coercion of potential donors (43). In addition, some patients, families and their physicians may be hesitant to discuss live transplantation because of perceived increased medical risks to family members who might already have medical conditions that could increase the risks of donation. However, our subgroup analyses (restricted to families where spouses and children did not report having such medical conditions) did not support this latter possibility. Some clinicians might argue family discussion of transplantation could be helpful, regardless of perceptions of patient or family donor willingness to consider live transplantation. One study on experiences of donors, recipients and third parties after transplantation suggested that open discussion and better education about donation might provide emotional support and reduce psychological distress for both potential donors and potential recipients (44). Nonetheless, physicians encouraging family discussion of LT should be aware of potential psychological risks associated with discussion of LT and should be prepared to help families obtain needed psychosocial support throughout the LT decision-making process (45). At a minimum, some renal dialysis networks strongly encourage patient-physician discussion of LT be included in their discussions of patients' treatment options, irrespective of family willingness to participate in such discussions (28,29).

Avenues through which improved patient-physician and family discussion of LT could be achieved include promotion of early patient-physician and family discussions of LT, the utilization of allied health professionals to assist families in the decision-making process and implementation of culturally appropriate structured programs designed to enhance African American patient and family education regarding LT. Early family-physician meetings to discuss LT (even in late stages of CKD prior to the need for dialysis) could serve to increase patient and family awareness of LT and provide an opportunity for the identification of medically eligible family donors. Such discussions could enhance patients' access to live transplantation and increase the possibility of preemptive transplantation, demonstrated to improve clinical outcomes and avoid costs and psychological impacts of dialysis therapy (46–48). Early discussions would depend on the timely referral of patients with advanced CKD to a nephrologist or transplant surgeon (47,48). Health professionals (e.g. social workers or counselors) could aid families' decision making, facilitate open discussion between patients and families regarding concerns related to live donation and provide much needed psychosocial support to patients and families as they face potentially challenging ethical dilemmas related to LT (49–51). Structured educational programs have been demonstrated to inform patients and their families about treatment options (including LT), encourage family discussion and enhance recruitment of relatives for donation (52,53). To be most effective, programs should be culturally tailored to address specific concerns African Americans may have, regarding the transplantation process, including mistrust of health care professionals, knowledge of the need for transplantation in the African American community and potential religious/spiritual concerns (54–56). Culturally tailored programs have previously been successful in raising African American's awareness of the need for donation and in addressing issues such as mistrust of physicians (57).

Limitations of this study deserve mention. First, our study population was recruited from three states, limiting the generalizability of our results to African American dialysis patients and their families living in other areas of the United States. Second, because we did not compare African American families to White families, we cannot ascertain whether patterns of family communication differ between these two groups, thus limiting our ability to draw conclusions regarding racial differences in patterns of communication as a potential explanation for ethnic/race disparities in rates of LT. Nonetheless, our data regarding rates of patient-physician discussion of LT in African Americans are similar to previously published data demonstrating ethnic/race disparities in rates of patient-physician discussion of LT and our study lends insight into potential mechanisms for suboptimal rates of patient-physician communication (14). Third, the cross-sectional nature of our study limits our ability to infer the causal nature of associations we observe between family communication and patient-physician communication about LT. It is unclear whether family discussion of LT leads to patient-physician discussion or vice versa. Fourth, patient, physician and family member reports of discussions regarding LT are subject to recall bias and may differ. Although we did not contact patients' physicians to ascertain their perceptions regarding the frequency of patient-physician discussion of LT, there was consistency between patient and family member reports of patient-family discussions regarding LT, adding validity to these reports. Our study did not collect information on patients' physicians' race. It is possible that patients' recollections regarding their discussions with physicians could be affected by their perceived racial/ethnic similarity with their physicians, as other studies have demonstrated race concordance between patients and their physicians is associated with patient satisfaction with care (58). In addition, the design of the original study dictated that only one child be recruited for the study and in over half of families, no child participated. Children who participated in the study may have better relationships with their parents than children who did not participate, and may be more likely to discuss transplantation with parents than non-participating children. Fifth, although patients provided self-reports of medical conditions, lack of clinical data (such as chart reviews) limited our ability to determine which patients were eligible for transplantation. Some might argue that rates of patient-physician discussion could be affected by patients' clinical eligibility for transplantation. However, open discussion of treatment options, regardless of clinical eligibility, provides a key mechanism through which patients and physicians can share in the clinical decision-making process (38,59,60). Finally, while we ascertained frequencies of discussions regarding LT, we did not collect information which could provide context for why discussion did or did not occur. In addition, although our questions were based on previously validated questions regarding patient preferences for transplantation and patient-physician discussion regarding transplantation, few studies have been performed to understand the interplay of patient, family and physician communication; results may differ in patients and families of different ethnic/racial and cultural backgrounds (14). Further studies are needed to more clearly understand the contexts within which patient, family and physician discussion of LT might occur. Notwithstanding these limitations, our study represents one of the largest systematic assessments of patterns of discussion of LT in African American families and provides important insight to potentially modifiable barriers to improving ethnic/race disparities in LT.

In conclusion, most African American dialysis patients desire transplantation and most African American families have the knowledge of LT, but universal patient-physician discussion of LT does not occur, rates of family-physician discussion of LT are low and rates of family discussions regarding LT vary among family members. Family discussion regarding LT is related to patient-physician discussion of LT. Enhanced early family-physician discussion of LT, the employment of allied health professionals to promote family discussion of LT and the institution of culturally appropriate programs to enhance discussion of LT in African American families could serve to improve suboptimal rates of discussion and enhance African American patients' access to LT.

Acknowledgment

  1. Top of page
  2. Abstract
  3. Introduction
  4. Methods
  5. Results
  6. Discussion
  7. Acknowledgment
  8. References

This study was supported by U01 DK57304 [National Institute of Diabetes & Digestive & Kidney Diseases (NIDDK)] (Drs. Klag, Parekh, Kao, Ms. Fink, Ms. Meoni); The Harold Amos Medical Faculty Development Program [Robert Wood Johnson Foundation] (Dr. Boulware); grants RO1DK59616-02S1 [NIDDK] (Dr. Boulware), K24-DK02856[NIDDK] (Dr. Klag), Carl W. Gottschalk Research Scholar Grant [American Society of Nephrology] and 1K23DK02872-01A1 [NIDDK] (Dr. Parekh) and K24-DK02643[NIDDK] (Dr. Powe).

References

  1. Top of page
  2. Abstract
  3. Introduction
  4. Methods
  5. Results
  6. Discussion
  7. Acknowledgment
  8. References
  • 1
    Jones CA, McQuillan GM, Kusek JW et al. Serum creatinine levels in the US population: third National Health and Nutrition Examination Survey. Am J Kidney Dis 1998; 32: 992999.
  • 2
    Coresh J, Astor BC, Greene T, Eknoyan G, Levey AS. Prevalence of chronic kidney disease and decreased kidney function in the adult US population: Third National Health and Nutrition Examination Survey. Am J Kidney Dis 2003; 41: 112.
  • 3
    U.S. Renal Data System. USRDS 2003 Annual Data Report: Atlas of End-Stage Renal Disease in the United States. Available at: http://www.usrds.org/adr.htm. Accessed on March 30, 2003.
  • 4
    Merkus MP, Jager KJ, Dekker FW, De Haan RJ, Boeschoten EW, Krediet RT. Quality of life over time in dialysis: The Netherlands Cooperative Study on the adequacy of dialysis. NECOSAD study group. Kidney Int 1999; 56: 720728.DOI: 10.1046/j.1523-1755.1999.00563.x
  • 5
    Hoy WE, Megill DM. End-stage renal disease in southwestern Native Americans, with special focus on the Zuni and Navajo Indians. Transplant Proc 1989; 21: 39063908.
  • 6
    Comstock RD, Castillo EM, Lindsay SP. Four-year review of the use of race and ethnicity in epidemiologic and public health research. Am J Epidemiol 2004; 159: 611619.
  • 7
    Kaufman JS, Cooper RS. Commentary: considerations for use of racial/ethnic classification in etiologic research. Am J Epidemiol 2001; 154: 291298.DOI: 10.1093/aje/154.4.291
  • 8
    United Network for Organ Sharing. 2000 Annual Report of the U.S. Scientific Registry for Transplant Recipients and the Organ Procurement and Transplantation Network: Transplant Data: 1990–1999. HHS/HRSA/OSP/DOT and UNOS 2001.
  • 9
    Kasiske BL, Neylan JF3rd, Riggio RR et al. The effect of race on access and outcome in transplantation. N Engl J Med 1991; 324: 302307.
  • 10
    Alexander GC, Sehgal AR. Barriers to cadaveric renal transplantation among blacks, women, and the poor. JAMA 1998; 280: 11481152.DOI: 10.1001/jama.280.13.1148
  • 11
    Isaacs RB, Lobo PI, Nock SL, Hanson JA, Ojo AO, Pruett TL. Racial disparities in access to simultaneous pancreas-kidney transplantation in the United States. Am J Kidney Dis 2000; 36: 526533.
  • 12
    Ojo A, Port FK. Influence of race and gender on related donor renal transplantation rates. Am J Kidney Dis 1993; 22: 835841.
  • 13
    Alexander GC, Sehgal AR. Why hemodialysis patients fail to complete the transplantation process. Am J Kidney Dis 2001; 37: 321328.
  • 14
    Ayanian JZ, Cleary PD, Weissman JS, Epstein AM. The effect of patients' preferences on racial differences in access to renal transplantation. N Engl J Med 1999; 341: 16611669.DOI: 10.1056/NEJM199911253412206
  • 15
    Gaston RS, Ayres I, Dooley LG, Diethelm AG. Racial equity in renal transplantation. The disparate impact of HLA-based allocation. JAMA 1993; 270: 13521356.DOI: 10.1001/jama.270.11.1352
  • 16
    Young CJ, Gaston RS. Renal transplantation in black Americans. N Engl J Med 2000; 343: 15451552.DOI: 10.1056/NEJM200011233432107
  • 17
    Kasiske BL, London W, Ellison MD. Race and socioeconomic factors influencing early placement on the kidney transplant waiting list. J Am Soc Nephrol 1998; 9: 21422147.
  • 18
    Soucie JM, Neylan JF, McClellan W. Race and sex differences in the identification of candidates for renal transplantation. Am J Kidney Dis 1992; 19: 414419.
  • 19
    Wolfe RA, Ashby VB, Milford EL et al. Differences in access to cadaveric renal transplantation in the United States. Am J Kidney Dis 2000; 36: 10251033.
  • 20
    U.S. Renal Data System. USRDS 2004 Annual Data Report: Atlas of End-Stage Renal Disease in the United States. Available at: http://www.usrds.org/adr.htm. Accessed on December 21, 2004.
  • 21
    Hariharan S, Johnson CP, Bresnahan BA, Taranto SE, McIntosh MJ, Stablein D. Improved graft survival after renal transplantation in the United States, 1988 to 1996. N Engl J Med 2000; 342: 605612.DOI: 10.1056/NEJM200003023420901
  • 22
    2003 Annual Report of the U.S. Organ Procurement and Transplantation Network and the Scientific Registry of Transplant Recipients: Transplant Data 1993–2002. Department of Health and Human Services, Health Resources and Services Administration, Office of Special Programs, Division of Transplantation , Rockville , MD ; United Network for Organ Sharing , Richmond , VA ; University Renal Research and Education Association , Ann Arbor , MI .
  • 23
    Howard-Cooper S. The Amazing Elliott carries on for Spurs. Available at: http://espn.go.com/nba/columns/howard-cooper/869316.html. Accessed on August 9, 2004.
  • 24
    Epstein AM, Ayanian JZ, Keogh JH et al. Racial disparities in access to renal transplantation—clinically appropriate or due to underuse or overuse? N Engl J Med 2000; 343: 15371545.DOI: 10.1056/NEJM200011233432106
  • 25
    Ratner LE, Kavoussi LR, Sroka M et al. Laparoscopic assisted live donor nephrectomy—a comparison with the open approach (see comments). Transplantation 1997; 63: 229233.DOI: 10.1097/00007890-199701270-00009
  • 26
    Tan HP, Maley WR, Kavoussi LR, Montgomery R, Ratner LE. Laparoscopic live donor nephrectomy: evolution of a new standard. Curr Opin Organ Transplant 2000; 5: 312318.DOI: 10.1097/00075200-200012000-00003
  • 27
    Ratner LE, Kavoussi LR, Schulam PG, Bender JS, Magnuson TH, Montgomery R. Comparison of laparoscopic live donor nephrectomy versus the standard open approach. Transplant Proc 1997; 29: 138139.DOI: 10.1016/S0041-1345(96)00037-1
  • 28
    Mid-Atlantic Renal Coalition. Living Donor Transplantation. Available at: http://www.esrdnet5.org/transpl.asp#morekidneys. Accessed on October 27, 2004.
  • 29
    Forum of End Stage Renal Disease Networks. Quality Improvement. Available at: http://www.esrdnetworks.org/quality_improve.htm. Accessed on October 27, 2004.
  • 30
    Figaro MK, Russo PW, Allegrante JP. Preferences for arthritis care among urban African Americans: “I don't want to be cut”. Health Psychol 2004; 23: 324329.DOI: 10.1037/0278-6133.23.3.324
  • 31
    Gordon EJ. Patients' decisions for treatment of end-stage renal disease and their implications for access to transplantation. Soc Sci Med 2001; 53: 971987.DOI: 10.1016/S0277-9536(00)00397-X
  • 32
    Thom DH, Kravitz RL, Bell RA, Krupat E, Azari R. Patient trust in the physician: relationship to patient requests. Fam Pract 2002; 19: 476483.DOI: 10.1093/fampra/19.5.476
  • 33
    Ayanian JZ, Cleary PD, Keogh JH, Noonan SJ, David-Kasdan JA, Epstein AM. Physicians' beliefs about racial differences in referral for renal transplantation. Am J Kidney Dis 2004; 43: 350357.DOI: 10.1053/j.ajkd.2003.10.022
  • 34
    Balkrishnan R, Dugan E, Camacho FT, Hall MA. Trust and satisfaction with physicians, insurers, and the medical profession. Med Care 2003; 41: 10581064.
  • 35
    Flood AB, Wennberg JE, Nease RF Jr, Fowler FJ Jr, Ding J, Hynes LM. The importance of patient preference in the decision to screen for prostate cancer. Prostate Patient Outcomes Research Team. J Gen Intern Med 1996; 11: 342349.
  • 36
    Braddock CH 3rd, Edwards KA, Hasenberg NM, Laidley TL, Levinson W. Informed decision making in outpatient practice: time to get back to basics. JAMA 1999; 282: 23132320.DOI: 10.1001/jama.282.24.2313
  • 37
    Greenfield S, Kaplan S, Ware JE Jr. Expanding patient involvement in care. Effects on patient outcomes. Ann Intern Med 1985; 102: 520528.
  • 38
    Epstein RM, Alper BS, Quill TE. Communicating evidence for participatory decision making. JAMA 2004; 291: 23592366.DOI: 10.1001/jama.291.19.2359
  • 39
    Wuerth DB, Finkelstein SH, Schwetz O, Carey H, Kliger AS, Finkelstein FO. Patients' descriptions of specific factors leading to modality selection of chronic peritoneal dialysis or hemodialysis. Perit Dial Int 2002; 22: 184190.
  • 40
    Kimmel PL, Peterson RA, Weihs KL et al. Dyadic relationship conflict, gender, and mortality in urban hemodialysis patients. J Am Soc Nephrol 2000; 11: 15181525.
  • 41
    Christensen AJ, Raichle K, Ehlers SL, Bertolatus AJ. Effect of family environment and donor source on patient quality of life following renal transplantation. Health Psychol 2002; 21: 468476.
  • 42
    Russell S, Jacob RG. Living-related organ donation: the donor's dilemma. Patient Educ Couns 1993; 21: 8999.DOI: 10.1016/0738-3991(93)90063-3
  • 43
    Hilton BA, Starzomski RC. Family decision making about living related kidney donation. ANNA J 1994; 21: 346354, 381; discussion 355.
  • 44
    Burroughs TE, Waterman AD, Hong BA. One organ donation, three perspectives: experiences of donors, recipients, and third parties with living kidney donation. Prog Transplant 2003; 13: 142150.
  • 45
    Franklin PM, Crombie AK. Live related renal transplantation: psychological, social, and cultural issues. Transplantation 2003; 76: 12471252.DOI: 10.1097/01.TP.0000087833.48999.3D
  • 46
    Mange KC, Joffe MM, Feldman HI. Effect of the use or nonuse of long-term dialysis on the subsequent survival of renal transplants from living donors. N Engl J Med 2001; 344: 726731.DOI: 10.1056/NEJM200103083441004
  • 47
    Winkelmayer WC, Glynn RJ, Levin R, Mittleman MA, Pliskin JS, Avorn J. Late nephrologist referral and access to renal transplantation. Transplantation 2002; 73: 19181923.DOI: 10.1097/00007890-200206270-00012
  • 48
    Cass A, Cunningham J, Snelling P, Ayanian JZ. Late referral to a nephrologist reduces access to renal transplantation. Am J Kidney Dis 2003; 42: 10431049.
  • 49
    Conrad NE, Murray LR. The psychosocial meanings of living related kidney organ donation: recipient and donor perspectives—literature review. ANNA J 1999; 26: 485490.
  • 50
    Eggeling C. The psychosocial implications of live-related kidney donation. EDTNA ERCA J 1999; 25: 1922.
  • 51
    Papachristou C, Walter M, Dietrich K et al. Motivation for living-donor liver transplantation from the donor's perspective: an in-depth qualitative research study. Transplantation 2004; 78: 15061514.DOI: 10.1097/01.TP.0000142620.08431.26
  • 52
    Schweitzer EJ, Yoon S, Hart J et al. Increased living donor volunteer rates with a formal recipient family education program. Am J Kidney Dis 1997; 29: 739745.
  • 53
    Franco T, Warren JJ, Menke KL et al. Developing patient and family education programs for a transplant center. Patient Educ Couns 1996; 27: 113120.DOI: 10.1016/0738-3991(95)00795-4
  • 54
    Boulware LE, Ratner LE, Cooper LA, Sosa JA, LaVeist TA, Powe NR. Understanding disparities in donor behavior: race and gender differences in willingness to donate blood and cadaveric organs. Med Care 2002; 40: 8595.DOI: 10.1097/00005650-200202000-00003
  • 55
    Boulware LE, Cooper LA, Ratner LE, LaVeist TA, Powe NR. Race and trust in the health care system. Public Health Rep 2003; 118: 358365.
  • 56
    Rozon-Solomon M, Burrows L. ‘Tis better to receive than to give: the relative failure of the African American community to provide organs for transplantation. Mt Sinai J Med 1999; 66: 273276.
  • 57
    Callender CO, Hall MB, Branch D. An assessment of the effectiveness of the Mottep model for increasing donation rates and preventing the need for transplantation–adult findings: program years 1998 and 1999. Semin Nephrol 2001; 21: 419428.
  • 58
    Cooper-Patrick L, Gallo JJ, Gonzales JJ et al. Race, gender, and partnership in the patient-physician relationship. JAMA 1999; 282: 583589.
  • 59
    Davison BJ, Parker PA, Goldenberg SL. Patients' preferences for communicating a prostate cancer diagnosis and participating in medical decision-making. BJU Int 2004; 93: 4751.DOI: 10.1111/j.1464-410X.2004.04553.x
  • 60
    Heisler M, Bouknight RR, Hayward RA, Smith DM, Kerr EA. The relative importance of physician communication, participatory decision making, and patient understanding in diabetes self-management. J Gen Intern Med 2002; 17: 243252.DOI: 10.1046/j.1525-1497.2002.10905.x