Design and approach of the Living Organ Video Educated Donors (LOVED) program to promote living kidney donation in African Americans (original) (raw)
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Transplantation Direct, 2018
Background. The purpose of the Living Organ Video Educated Donors (LOVED) program is to address living donor kidney transplantation (LDKT) disparities in African Americans who experience half the rates of LDKTs compared with whites in the United States. Methods. LOVED is an iterative-designed, distance-based, navigator-led, mobile health educational program, developed via guidance from patients, Self-determination Theory and Social Cognitive Theory. The purpose of this study was to assess the feasibility of LOVED using a proof-of-concept design to increase African Americans' knowledge about the living donor process to improve their willingness to approach others about being a potential kidney donor. The 8-week LOVED program consisted of (1) a computer tablet-delivered education program, (2) group video chat sessions with an African American LDKT recipient navigator, and (3) additional communication between group members and the navigator. Results. Twenty-five participants completed the LOVED study. Poststudy focus groups were analyzed using inductive and deductive qualitative descriptive techniques and analysts found 6 themes reporting LOVED being highly acceptable with the program being overall empowering and helpful. The study had 0% attrition, 90.9% adherence to the education videos and 88% adherence to the video chat sessions. Surveys showed statistically significant improvements in LDKT knowledge, higher willingness to communicate to others about their need, lower donor concerns, and higher self-efficacy about LDKT. Conclusions. Findings indicate that participation in LOVED can lead to improvements in predictors to increase the number of evaluations and LDKTs in African Americans; however, these findings need to be confirmed in adequately powered, randomized controlled trials. Using LOVED may reduce barriers to broadly address LDKT disparities. Findings from this study will inform the design of a future statewide randomized controlled trials.
BMC Nephrology, 2014
Background: Because of the deceased donor organ shortage, more kidney patients are considering whether to receive kidneys from family and friends, a process called living donor kidney transplantation (LDKT). Although Blacks and Hispanics are 3.4 and 1.5 times more likely, respectively, to develop end stage renal disease (ESRD) than Whites, they are less likely to receive LDKTs. To address this disparity, a new randomized controlled trial (RCT) will assess whether Black, Hispanic, and White transplant patients' knowledge, readiness to pursue LDKT, and receipt of LDKTs can be increased when they participate in the Your Path to Transplant (YPT) computer-tailored intervention.
Current Transplantation Reports, 2016
A promising strategy for increasing living donor kidney transplant (LDKT) rates is improving education about living donation for both prospective kidney transplant recipients and living donors to help overcome the proven knowledge, psychological, and socioeconomic barriers to LDKT. A recent Consensus Conference on Best Practices in Live Kidney Donation recommended that comprehensive LDKT education be made available to patients at all stages of chronic kidney disease (CKD). However, in considering how to implement this recommendation across different healthcare learning environments, the current lack of available guidance regarding how to design, deliver, and measure the efficacy of LDKT education programs is notable. In the current article, we provide an overview of how one behavior change theory, the Transtheoretical Model of Behavior Change, can guide the delivery of LDKT education for patients at various stages of CKD and readiness for LDKT. We also discuss the importance of creating educational programs for both potential kidney transplant recipients and living donors, and identify key priorities for educational research to reduce racial disparities in LDKT and increase LDKT rates.
BMC Nephrology, 2015
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.
BMC nephrology, 2015
Live donor kidney transplantation (LDKT), an optimal therapy for many patients with end-stage kidney disease, is underutilized, particularly by African Americans. Potential recipient difficulties initiating and sustaining conversations about LDKT, identifying willing and medically eligible donors, and potential donors' logistical and financial hurdles have been cited as potential contributors to race disparities in LDKT. Few interventions specifically targeting these factors have been tested. We report the protocol of the Talking about Living Kidney Donation Support (TALKS) study, a study designed to evaluate the effectiveness of behavioral, educational and financial assistance interventions to improve access to LDKT among African Americans on the deceased donor kidney transplant recipient waiting list. We adapted a previously tested educational and social worker intervention shown to improve consideration and pursuit of LDKT among patients and their family members for its use a...
Progress in transplantation (Aliso Viejo, Calif.), 2016
Hispanic dialysis patients often encounter barriers to learning about living kidney donation and transplantation. Effective culturally targeted interventions to increase knowledge are lacking. We developed a culturally targeted educational website to enhance informed treatment decision making for end-stage kidney disease. A pretest/posttest intervention study was conducted among adult Hispanic patients undergoing dialysis at 5 dialysis centers in Chicago, Illinois. Surveys included a 31-item, multiple-choice pretest/posttest of knowledge about kidney transplantation and living donation, attitudes about the website, Internet use, and demographics. The intervention entailed viewing 3 of 6 website sections for a total of 30 minutes. The pretest/posttest was administered immediately before and after the intervention. Participants completed a second posttest via telephone 3 weeks thereafter to assess knowledge retention, attitudes, and use of the website. Sixty-three patients participate...
Enabling Conversations: African American Patients’ Changing Perceptions of Kidney Transplantation
Journal of Racial and Ethnic Health Disparities, 2018
Background Racial disparities in access to kidney transplantation (KTX) among African Americans (AAs) have been attributed in part to insufficient patient education. Interventions are needed to provide AAs with culturally sensitive, understandable information that increases their capacity to pursue KTX. Research about the factors that activated patients to pursue KTX is necessary to inform such interventions; however, few studies have yielded this type of information. Methods We conducted focus groups and one-on-one interviews with 26 AA referred, listed, or transplanted patients and 3 nephrologists to explore decisional factors that foster pursuit of KTX. Interviews were recorded and transcribed, and qualitative analytic methods to identify themes and subthemes were applied in an effort to inform message content for a future educational video intervention. Results Three themes emerged from thematic content analysis: (1) healthcare provider communication, (2) exposure to peer transplant success, and (3) family encouragement. Enabling provider communication techniques include repetition about the KTX option, optimistic messaging about KTX access, and comforting conversations about the KTX process. Conclusion We identified information based on patient views and experiences to help inspire and develop animated videos designed to activate patients towards KTX. Interventions are needed that address informational gaps and focus on emotion to improve patients' experiences and ability to understand transplant opportunities.
Clinical transplantation, 2017
Patients considering renal transplantation face an increasingly complex array of choices as a result of the revised kidney transplant allocation system. Decision aids have been shown to improve patient decision making through the provision of detailed, relevant, individualized clinical data. A mobile iOS based application (app) including animated patient education and individualized risk adjusted outcomes following kidney transplants with varying donor characteristics and DSA waiting times was piloted in 2 large US transplant programs with a diverse group of renal transplant candidates (N=81). The majority (86%) of patients felt that the app improved their knowledge and was culturally appropriate for their race/ethnicity (67%-85%). Patients scored significantly higher on transplant knowledge testing (9.1/20 to 13.8/20 p<0.001) after viewing the app, including patients with low health literacy (8.0 to 13.0 p<0.001). Overall knowledge of and interest in living and deceased donor...
BMC Nephrology, 2011
Background: Live kidney transplantation (LKT) is underutilized, particularly among ethnic/racial minorities. The effectiveness of culturally sensitive educational and behavioral interventions to encourage patients' early, shared (with family and health care providers) and informed consideration of LKT and ameliorate disparities in consideration of LKT is unknown. Methods/Design: We report the protocol of the Talking About Live Kidney Donation (TALK) Study, a two-phase study utilizing qualitative and quantitative research methods to design and test culturally sensitive interventions to improve patients' shared and informed consideration of LKT. Study Phase 1 involved the evidence-based development of culturally sensitive written and audiovisual educational materials as well as a social worker intervention to encourage patients' engagement in shared and informed consideration of LKT. In Study Phase 2, we are currently conducting a randomized controlled trial in which participants with progressing chronic kidney disease receive: 1) usual care by their nephrologists, 2) usual care plus the educational materials, or 3) usual care plus the educational materials and the social worker intervention. The primary outcome of the randomized controlled trial will include patients' self-reported rates of consideration of LKT (including family discussions of LKT, patient-physician discussions of LKT, and identification of an LKT donor). We will also assess differences in rates of consideration of LKT among African Americans and non-African Americans.