African American and Non-African American Patients’ and Families’ Decision Making About Renal Replacement Therapies

Sheu, Johanna; Ephraim, Patti L.; Powe, Neil R.; Rabb, Hamid; Senga, Mikiko; Evans, Kira; Jaar, Bernard G.; Crews, Deidra C.; Greer, Raquel C.; Boulware, L. Ebony

doi:10.1177/1049732312443427

Cited by 50 publications

(58 citation statements)

References 25 publications

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“…This is an important finding because past work[40, 41] has shown that patients who are well-informed about transplant are more likely to be interested in pursuing it, suggesting that some of the reluctance to pursue transplant expressed by our participants may have stemmed from a lack of knowledge and from ineffective doctor-patient communication, not just from a lack of trust. Thus, our findings highlight the need to ensure that patients are receiving accurate information about the risks and benefits of transplant, and that clinicians have the time and training to engage effectively in discussions with patients around transplant preferences.…”

Section: Discussionmentioning

confidence: 64%

Mistrust, Misperceptions, and Miscommunication: A Qualitative Study of Preferences About Kidney Transplantation Among African Americans

Wachterman

McCarthy

Marcantonio

et al. 2015

Transplantation Proceedings

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Background Kidney transplantation rates in the United States are lower among African-Americans than among Whites. Well-documented racial disparities in access to transplantation explain some, but not all, of these differences. Prior survey-based research suggests that African-American dialysis patients are less likely than Whites to desire transplantation, but little research has focused on an in-depth exploration of preferences about kidney transplantation among African-Americans. Thus, the purpose of the study was to explore preferences, and compare patients’ expectations about transplantation with actual status on the transplant list. Methods We conducted semi-structured interviews with sixteen African-Americans receiving chronic hemodialysis. We analyzed the interviews using the constant comparative method of qualitative analysis. We also reviewed the dialysis center's transplant list. Results Four dominant themes emerged: 1) Varied desire for transplant; 2) Concerns about donor source; 3) Barriers to transplantation; 4) Lack of communication with nephrologists and transplant team. A thread of mistrust about equity in the transplantation process flowed through themes 2-4. In 7/16 cases, patients’ understanding of their transplant listing status was discordant with their actual status. Conclusions Our study suggests that many African-Americans on hemodialysis are interested in kidney transplantation, but that interest is often tempered by concerns about transplantation, including misconceptions about the risks to recipients and donors. Mistrust about equity in the organ allocation process also contributed to ambivalence. The discordance between patients’ perceptions of listing status and actual status suggests communication gaps between African-American hemodialysis patients and physicians. Clinicians should avoid interpreting ambivalence about transplantation as lack of interest.

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Section: Discussionmentioning

confidence: 64%

Mistrust, Misperceptions, and Miscommunication: A Qualitative Study of Preferences About Kidney Transplantation Among African Americans

Wachterman

McCarthy

Marcantonio

et al. 2015

Transplantation Proceedings

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“…Second, because 73% of patients with ESRD receive regular in-center dialysis treatments in approximately 6000 centers in the United States (1), systematized education within this setting can provide a much needed opportunity to educate more patients with ESRD about LDKT, including those who have not yet presented to a transplant center for evaluation. Third, ensuring that comprehensive LDKT education occurs within dialysis centers may help to reduce known ethnic or racial disparities in access to transplant education (7,8) and LDKT (9) by teaching these patients about their option for LDKT and about the steps needed to begin evaluation or seek living donors. Fourth, although positive messages about donating kidneys upon death are available to the general public (10), misinformation about LDKT still remains and can be exacerbated by inaccurate media portrayals (11).…”

Section: Introductionmentioning

confidence: 99%

Living Donor Kidney Transplantation

Waterman¹,

Morgievich²,

Cohen³

et al. 2015

Clinical Journal of the American Society of Nephrology

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Living donor kidney transplantation (LDKT) offers better quality of life and clinical outcomes, including patient survival, compared with remaining on dialysis or receiving a deceased donor kidney transplant. Although LDKT education within transplant centers for both potential recipients and living donors is very important, outreach and education to kidney patients in settings other than transplant centers and to the general public is also critical to increase access to this highly beneficial treatment. In June 2014, the American Society of Transplantation's Live Donor Community of Practice, with the support of 10 additional sponsors, convened a consensus conference to determine best practices in LDKT, including a workgroup focused on developing a set of recommendations for optimizing outreach and LDKT education outside of transplant centers. Members of this workgroup performed a structured literature review, conducted teleconference meetings, and met in person at the 2-day conference. Their efforts resulted in consensus around the following recommendations. First, preemptive transplantation should be promoted through increased LDKT education by primary care physicians and community nephrologists. Second, dialysis providers should be trained to educate their own patients about LDKT and deceased donor kidney transplantation. Third, partnerships between community organizations, organ procurement organizations, religious organizations, and transplant centers should be fostered to support transplantation. Fourth, use of technology should be improved or expanded to better educate kidney patients and their support networks. Fifth, LDKT education and outreach should be improved for kidney patients in rural areas. Finally, a consensus-driven, evidencebased public message about LDKT should be developed. Discussion of the effect and potential for implementation around each recommendation is featured, particularly regarding reducing racial and socioeconomic disparities in access to LDKT. To accomplish these recommendations, the entire community of professionals and organizations serving kidney patients must work collaboratively toward ensuring accurate, comprehensive, and up-to-date LDKT education for all patients, thereby reducing barriers to LDKT access and increasing LDKT rates.

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“…6 Although the US government mandates that all ESRD patients receive education about kidney transplant, 7 current research suggests that at least 30% of dialysis patients are uninformed about this option. 8 Further, research has shown that health care providers are often unable to educate patients about transplant because of their own lack of knowledge or time constraints.…”

mentioning

confidence: 99%

Applying Best Practices to Designing Patient Education for Patients with End-Stage Renal Disease Pursuing Kidney Transplant

et al. 2015

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Despite the known benefits of kidney transplant, less than 30% of the 615000 patients living with end-stage renal disease (ESRD) in the United States have received a transplant. More than 100000 people are presently on the transplant waiting list. Although the shortage of kidneys for transplant remains a critical factor in explaining lower transplant rates, another important and modifiable factor is patients’ lack of comprehensive education about transplant. The purpose of this article is to provide an overview of known best practices from the broader literature that can be used as an evidence base to design improved education for ESRD patients pursuing a kidney transplant. Best practices in chronic disease education generally reveal that education that is individually tailored, understandable for patients with low health literacy, and culturally competent is most beneficial. Effective education helps patients navigate the complex health care process successfully. Recommendations for how to incorporate these best practices into transplant education design are described. Providing more ESRD patients with transplant education that encompasses these best practices may improve their ability to make informed health care decisions and increase the numbers of patients interested in pursuing transplant.

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African American and Non-African American Patients’ and Families’ Decision Making About Renal Replacement Therapies

Cited by 50 publications

References 25 publications

Mistrust, Misperceptions, and Miscommunication: A Qualitative Study of Preferences About Kidney Transplantation Among African Americans

Mistrust, Misperceptions, and Miscommunication: A Qualitative Study of Preferences About Kidney Transplantation Among African Americans

Living Donor Kidney Transplantation

Applying Best Practices to Designing Patient Education for Patients with End-Stage Renal Disease Pursuing Kidney Transplant

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