Although mandates require all dialysis patients be informed about transplant, Black and low-income patients remain less likely to receive transplant education, and significant racial and socioeconomic disparities in access to transplant persist. This mixed methods study, utilizing surveys and focus groups, examined 48 dialysis providers’ perceptions of transplant barriers for Black and low-income patients. Focus group transcripts were coded for common themes, which were organized by level of the Socio-Ecological Model for Transplant (SEMT). On surveys, over 50 percent of providers reported having insufficient time to provide transplant education. In focus groups, providers perceived that Black and low-income patients experience greater barriers to transplant. These perceptions, as well as limited time and resources, could enable subtle biases against comprehensive transplant education for these patient groups to emerge. Raising awareness among providers about existing biases and supplementing transplant education within dialysis centers may improve the consistency of education and access to transplant.

Background

Compared to others, dialysis patients who are socioeconomically disadvantaged or Black are less likely to receive education about deceased donor kidney transplant (DDKT) and living donor kidney transplant (LDKT) before they reach transplant centers, often due to limited availability of transplant education within dialysis centers. Since these patients are often less knowledgeable or ready to pursue transplant, educational content must be simplified, made culturally sensitive, and presented gradually across multiple sessions to increase learning and honor where they are in their decision-making about transplant. The Explore Transplant at Home (ETH) program was developed to help patients learn more about DDKT and LDKT at home, with and without telephone conversations with an educator.

Methods and study design

In this randomized controlled trial (RCT), 540 low-income Black and White dialysis patients with household incomes at or below 250 % of the federal poverty line, some of whom receive financial assistance from the Missouri Kidney Program, will be randomly assigned to one of three education conditions: (1) standard-of-care transplant education provided by the dialysis center, (2) patient-guided ETH (ETH-PG), and (3) health educator-guided ETH (ETH-EG). Patients in the standard-of-care condition will only receive education provided in their dialysis centers. Those in the two ETH conditions will receive four video and print modules delivered over an 8 month period by mail, with the option of receiving supplementary text messages weekly. In addition, patients in the ETH-EG condition will participate in multiple telephonic educational sessions with a health educator. Changes in transplant knowledge, decisional balance, self-efficacy, and informed decision making will be captured with surveys administered before and after the ETH education.

Discussion

At the conclusion of this RCT, we will have determined whether an education program administered to socioeconomically disadvantaged dialysis patients, over several months directly in their homes, can help more individuals learn about the options of DDKT and LDKT. We also will be able to examine the efficacy of different educational delivery approaches to further understand whether the addition of a telephone educator is necessary for increasing transplant knowledge.

Trial registration

ClinicalTrials.gov, NCT02268682.