Communicating About Choices in Transplantation (COACH)

Traino, Heather M.; West, Stacy; Nonterah, Camilla W.; Russell, Jennifer St. Clair; Yuen, Eva

doi:10.1177/1526924816679844

Cited by 17 publications

(41 citation statements)

References 27 publications

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“…Furthermore, African Americans report less communication regarding information about transplantation from their physicians [21, 22]. Studies have found that poor patient-provider communication and family-provider communication contributes to the lower level of knowledge regarding the benefits of kidney transplantation in African Americans [23]. …”

Section: Discussionmentioning

confidence: 99%

Racial/Ethnic Differences in Barriers to Kidney Transplant Evaluation among Hemodialysis Patients

2017

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Background: Only a small percentage of dialysis patients receive a transplant and this is particularly the case for racial/ethnic minorities. Our objective was to identify barriers to initial transplant evaluation in our dialysis centers. Methods: We conducted a survey of adult hemodialysis patients from 4 dialysis units in the Denver Metro area in 2016. Participants completed an 11-item survey with demographic information and questions regarding time on dialysis, if a provider ever spoke to them about transplant, and whether they had been evaluated for a transplant. Reasons for not having an evaluation were explored. Descriptive statistics, chi-square analyses, and multivariate analyses were used to examine the responses. Results: A total of 167 patients completed the survey (response rate 63.9%). The majority of participants were male and were Hispanic (49%) or Non-Hispanic black (31.7%). Of these, 140 patients (84.0%) reported discussing kidney transplantation with their doctor but only 53% reported having a transplant evaluation. After adjustment for age, gender, and time on dialysis, significantly fewer blacks reported having an evaluation than Non-Hispanic whites or Hispanics (43.4 vs. 57.7% [whites] and 59.7% [Hispanics], p = 0.03). The most frequent responses of the patients who had not been evaluated were the following: not referred by their provider (46%), did not know how to proceed (43.4%), or did not understand the benefits (39.5%) or transplant process (38.2%). Compared to Non-Hispanic whites, blacks and Hispanics reported less understanding of the benefits and process of transplant. Conclusion: Timely referral by providers and improved kidney transplantation education may reduce disparities in access to kidney transplantation.

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Section: Discussionmentioning

confidence: 99%

Racial/Ethnic Differences in Barriers to Kidney Transplant Evaluation among Hemodialysis Patients

2017

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“…11 Third, candidates and their families may have, or perceive they have, limited social networks or individuals that they feel comfortable approaching about living donation. [12][13][14] Fourth, there may be social or financial limitations on an individual's ability to pursue living donation. [15][16][17][18] And fifth, transplant teams may variably support the option of living donation for their patients, such that the option is not offered at their center or even region.…”

Section: Introductionmentioning

confidence: 99%

“…Second, evidence exists from this population that some patients and potential donors may have general mistrust of the medical community and therefore seek to avoid an additional surgery . Third, candidates and their families may have, or perceive they have, limited social networks or individuals that they feel comfortable approaching about living donation . Fourth, there may be social or financial limitations on an individual's ability to pursue living donation .…”

Section: Introductionmentioning

confidence: 99%

Barriers to access in pediatric living‐donor liver transplantation

Mogul

Lee

Purnell

et al. 2019

Pediatric Transplantation

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Children receiving a LDLT have superior post‐transplant outcomes, but this procedure is only used for 10% of transplant recipients. Better understanding about barriers toward LDLT and the sociodemographic characteristics that influence these underlying mechanisms would help to inform strategies to increase its use. We conducted an online, anonymous survey of parents/caregivers for children awaiting, or have received, a liver transplant regarding their knowledge and attitudes about LDLT. The survey was completed by 217 respondents. While 97% of respondents understood an individual could donate a portion of their liver, only 72% knew the steps in evaluation, and 69% understood the donor surgery was covered by the recipient's insurance. Individuals with public insurance were less likely than those with private insurance to know the steps for LDLT evaluation (44% vs 82%; P < 0.001). Respondents with public insurance were less likely to know someone that had been a living donor (44% vs 56%; P = 0.005) as were individuals without a college degree (64% vs 85%; P = 0.007). Nearly all respondents generally trusted their healthcare team. Among respondents, 82% believed they were well‐informed about LDLT but individuals with public insurance were significantly less likely to feel well‐informed (67% vs 87%; P = 0.03) and to understand how donor surgery might impact donor work/time off (44% vs 81%; P = 0.001). Substantial gaps exist in parental understanding about LDLT, including its evaluation, potential benefits, and complications. Greater emphasis on addressing these barriers, especially to individuals with fewer resources, will be helpful to expand the use of LDLT.

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“…5 These discussions are vital to the process of organ donation, as they increase the likelihood of finding potential donors and talking about LDKT with clinicians, each of which may lessen the need for dialysis, reduce the duration of dialysis, and decrease the wait time for a transplantable kidney. [6][7][8][9][10][11][12][13][14] Discussing LDKT with family or friends may also facilitate patients' receipt of desired or needed support for the complex treatment decisions they face, result in the recruitment of living donor champions, provide opportunities to process information and voice concerns, and benefit both physical and mental health. [13][14][15][16][17][18][19] Further, communication is a modifiable social process or behavior that can be targeted as a strategy for increasing LDKT.…”

Section: Introductionmentioning

confidence: 99%

“…[6][7][8][9][10][11][12][13][14] Discussing LDKT with family or friends may also facilitate patients' receipt of desired or needed support for the complex treatment decisions they face, result in the recruitment of living donor champions, provide opportunities to process information and voice concerns, and benefit both physical and mental health. [13][14][15][16][17][18][19] Further, communication is a modifiable social process or behavior that can be targeted as a strategy for increasing LDKT. 10,13,14 Extant research on LDKT discussions with family or friends, however, is limited and has often concentrated on donation requests.…”

Section: Introductionmentioning

confidence: 99%

African Americans’ discussions about living‐donor kidney transplants with family or friends: Who, what, and why not?

DePasquale

Ellis

Sudan

et al. 2021

Clinical Transplantation

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Background: Although discussions with family or friends can improve access to livingdonor kidney transplantation (LDKT), they remain an understudied step in the LDKT process.Methods: Among 300 African American transplant candidates, we examined how sociodemographic, clinical, LDKT-related, and psychosocial characteristics related to the occurrence of LDKT discussions with family or friends. We also analyzed the relation between discussion occurrence and donor activation on transplant candidates' behalves (at least one donor inquiry or completed donor evaluation in the medical record). We assessed associations of discussion characteristics (context, content, and perceptions) with donor activation among discussants, and we identified discussion barriers among non-discussants.Results: Most candidates (90%) had discussed LDKT. Only family functioning was statistically significantly associated with discussion occurrence. Specifically, family dysfunction was associated with 62% lower odds of discussion than family function.Family functioning, discussion occurrence, and different discussion characteristics were statistically significantly related to donor activation. The most prevalent discussion barrier was never having thought about discussing LDKT.Conclusions: Family functioning affected the likelihood of discussing LDKT, and family functioning, discussion occurrence, and discussion characteristics were associated with donor activation. Advancing understanding of how family functioning and LDKT discussions affect progression to LDKT may benefit interventions to increase LDKT.

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Communicating About Choices in Transplantation (COACH)

Abstract: Results provide preliminary support for the program's impact. Moreover, participant evaluations of the COACH were overwhelmingly positive. A more definitive program evaluation with a larger, more diverse sample is currently underway.

Cited by 17 publications

References 27 publications

Racial/Ethnic Differences in Barriers to Kidney Transplant Evaluation among Hemodialysis Patients

Racial/Ethnic Differences in Barriers to Kidney Transplant Evaluation among Hemodialysis Patients

Barriers to access in pediatric living‐donor liver transplantation

African Americans’ discussions about living‐donor kidney transplants with family or friends: Who, what, and why not?

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