Using Focus Groups to Understand Dialysis Staff Perspectives on Delivering Transplant Education.

INTRODUCTION: Kidney transplant education in dialysis facilities could be optimized with internet resources, like videos, but most qualitative research predates widespread availability of online video education about kidney transplantation. To improve understanding of dialysis staff transplant education practices, as well as the potential value of video, we conducted focus groups of dialysis center staff members in Buffalo, NY. METHODS/APPROACH: Seventeen focus groups (97 participants: 53 nurses, 10 dialysis technicians, 6 social workers, 6 dieticians, 7 administrative personnel, 2 trainees, and 1 insurance coordinator) from 8 dialysis facilities in Buffalo, NY, were conducted, audio-recorded, transcribed, and analyzed. After thematic data analysis, a diverse patient and caregiver community advisory board was invited to comment, and their voices were integrated. Findings: Five key themes were identified that captured barriers to transplant education delivery and how online video could be a facilitator: (1) delivery of transplant education was reliant on one person, (2) other dialysis staff had time to answer transplant questions but felt uninformed, (3) patient lack of interest in existing supplementary transplant education, (4) patient disinterest in transplantation education was due to education timing, feeling overwhelmed, and transplant fear/ambivalence, and (5) video education could be flexible, low effort, and spark transplant interest. Study limitations are potential selection bias and inclusion of English-speaking participants only. DISCUSSION: Dialysis staff barriers of time, insufficient knowledge, and limited resources to provide education to patients and their care partners may be mitigated with online educational videos without increasing staff workload.

Formative Usability of the Kidneytime Online Live Donor Kidney Transplant Education Tool Among Transplant Candidates.

BACKGROUND: Web-based education may be a powerful tool to support transplant candidates' learning and communication about live donor kidney transplantation. Few educational interventions are web-based and have education sharing for living donor transplant as a primary goal. METHODS: Through user-centered design and iterative usability testing, we developed a web platform, called KidneyTIME, to support an educational intervention for adult transplant candidates. KidneyTIME delivers animated videos to improve candidate knowledge, motivation, and self-efficacy to pursue living donor transplantation and to promote outreach through video sharing. The animated-video educational content was previously produced by the researchers. We conducted a formative usability evaluation of the KidneyTIME web platform to enable users to find, view, and share the previously produced videos. A total of 30 kidney transplant candidates were involved in 4 rounds of testing at one transplant center, with amendments made after each round. RESULTS: Transplant candidates were predominantly White non-Hispanic; 47% had incomes <$30 000 and >43% had vision or motor impairment. Readability, navigation, and failure to find videos were the main usability issues identified. Substantial improvements were found in the usability of most functions after implementing certain features, such as enlarging text and buttons, enhancing contrast, and simplifying presentation. Participants reported that the intervention was user friendly and easy to navigate. CONCLUSION: Considering feedback from a wide spectrum of users has improved the usability of KidneyTIME. A salient concern for End stage kidney disease populations is ensuring online accessibility despite vision and motor impairments.

Video education to facilitate patient outreach about living kidney donation: A proof of concept.

BACKGROUND: Increasing living-donor kidney transplantation (LDKT) requires education of transplant candidates and their social network. This pre-post study tested the feasibility and acceptability of KidneyTIME, an intervention which leverages LDKT video-based educational content designed for sharing. METHODS: Adult kidney candidates undergoing transplant evaluation/re-evaluation and their caregivers at a single transplant center viewed different sets of KidneyTIME videos prior to evaluation. Change in LDKT knowledge, self-efficacy, and concerns was assessed before and immediately after exposure and 3 weeks later. Also assessed were post-exposure program feedback, online use, and living donor (LD) inquiry. RESULTS: A total of 82 candidates and 79 caregivers participated. Viewers of KidneyTIME demonstrated increases in mean LDKT knowledge by +71% and communication self-efficacy by +48%, and reductions in concerns by -21%. The intervention was received positively, with over 95% of participants agreeing that the videos were understandable, credible, and engaging. By 3 weeks follow-up, 58% had viewed it again, 63% of family clusters had shared it, and 100% would recommend the program to a friend. Time to LD inquiry was similar to historic controls. CONCLUSION: KidneyTime improved facilitators of LDKT, was rated as highly acceptable, and was highly shared, but did not impact LD inquiry during the COVID-19 pandemic.

A Narrative Review of Qualitative Studies Describing Access to Kidney Transplantation.

BACKGROUND: This review used the Information-Motivation-Behavioral Skills (IMB) model of health behavior change to conceptualize the determinants of kidney transplant access behavior for adult patients with end-stage renal disease (ESRD). METHODS: A narrative review of qualitative studies of patient access to kidney transplantation was undertaken. Only articles in English were accessed. The existing literature was critically analyzed using theoretical constructs of the IMB model and thematic synthesis was performed. RESULTS: Results suggest patients having more information (greater transplant knowledge), more personal motivation (higher transplant outcomes expectations), more social motivation (more social and provider support), and more selfefficacy (confidence in navigating the transplant continuum) may be more likely to perform transplant access behaviors. CONCLUSION: Our findings provide a framework for considering patients' levels of knowledge, motivation, and self-efficacy in future educational and behavioral interventions for ESRD patients.

Kidney Transplant Evaluation and Listing: Development and Preliminary Evaluation of Multimedia Education for Patients.

BACKGROUND Patient knowledge gaps about the evaluation and waitlisting process for kidney transplantation lead to delayed and incomplete testing, which compromise transplant access. We aimed to develop and evaluate a novel video education approach to empower patients to proceed with the transplant evaluation and listing process and to increase their knowledge and motivation. MATERIAL AND METHODS We developed 2 theory-informed educational animations about the kidney transplantation evaluation and listing process with input from experts in transplantation and communication, 20 candidates/recipients, 5 caregivers, 1 anthropologist, 3 community advocates, and 36 dialysis or transplant providers. We then conducted an online pre-post study with 28 kidney transplantation candidates to measure the acceptability and feasibility of the 2 videos to improve patients' evaluation and listing knowledge, understanding, and concerns. RESULTS Compared with before intervention, the mean knowledge score increased after intervention by 38% (5.7 to 7.9; P<0.001). Increases in knowledge effect size were large across age group, health literacy, education, technology access, and duration of pretransplant dialysis. The proportion of positive responses increased from before to after animation viewing for understanding the evaluation process (25% to 61%; P=0.002) and waitlist placement (32% to 86%; P<0.001). Concerns about list placement decreased (32% to 7%; P=0.039). After viewing the animations, >90% of responses indicated positive ratings on trusting the information, comfort level with learning, and engagement. CONCLUSIONS In partnership with stakeholders, we developed 2 educational animations about kidney transplant evaluation and listing that were positively received by patients and have the potential to improve patient knowledge and understanding and reduce patient concerns.

Educational Animations to Inform Transplant Candidates About Deceased Donor Kidney Options: An Efficacy Randomized Trial.

BACKGROUND: Transplant candidates struggle making decisions about accepting kidneys with variable kidney donor profile index (KDPI) and increased risk donor (IRD) status. METHODS: This single site, pilot randomized controlled trial evaluated the efficacy of 2 animations to improve KDPI/IRD knowledge, decisional self-efficacy, and willingness. Kidney candidates were randomly assigned to animation viewing plus standard nurse discussion (intervention) or standard nurse discussion alone (control). Linear regression was used to test the significance of animation exposure after controlling for covariates (α < 0.1). RESULTS: Mean age was 60 years, and 27% were African American. Both intervention (n = 42) and control (n = 38) groups received similar education at similar duration (12.8 versus 11.8 min, respectively), usually by the same dedicated nurse educator (85% versus 75%, respectively). On multivariate analysis, the intervention group (versus control) exhibited significantly increased knowledge (ß = 0.23; 95% confidence interval, 0.66-1.77) and IRD willingness (ß = 0.22; 95% confidence interval, 0.05-0.86). There were no between-group differences in KDPI >85% willingness or distribution of KDPI/IRD decisional self-efficacy. Over 90% of participants provided positive ratings on each of 11 acceptability items. CONCLUSIONS: Supporting conventional IRD and KDPI education with educational animations can improve knowledge and IRD willingness compared with standard methods.

Development of the living donation and kidney transplantation information made easy (KidneyTIME) educational animations.

BACKGROUND: Current web-based educational approaches about living kidney donation (LKD) are complex, lengthy, and/or text-laden, which may impair accurate interpretation of information, thereby limiting kidney transplant access. PURPOSE: This paper describes the process of developing animation-based LKD education designed to be suitable for and acceptable to kidney transplant candidates and their support networks. METHODS: Based on formative work, early animation prototypes were designed by a transplant surgeon and a health communication expert. In qualitative focus groups and individual interviews, animation prototypes were shown to 46 kidney transplant recipients, 28 kidney transplant candidates, 32 previous or potential kidney donors, 10 caregivers, 32 transplant providers, 24 dialysis providers, and 4 cultural and community advisors for their input regarding animation suitability, acceptability, and potential usability/feasibility. Viewer feedback was used to iteratively refine the animations. Animation design to facilitate adult learning was guided by elaboration theory, Bandura's self-efficacy theory, and Mayer's cognitive theory of multimedia learning. RESULTS: KidneyTIME currently consists of 12 animations about LKD process, benefits, and risks. CONCLUSIONS: Patients/friends/family members, experts, and stakeholders provided valuable feedback to the research team that was integrated into the development of KidneyTIME with the goal of enhancing suitability, acceptability, engagement, usability, and feasibility of dissemination.

Development and preliminary evaluation of an animation (simplifyKDPI) to improve kidney transplant candidate understanding of the Kidney Donor Profile Index.

BACKGROUND: Transplant candidates are reluctant to accept kidneys from high Kidney Donor Profile Index (KDPI) donors. Incomplete understanding can lead to transplant delays for older transplant candidates. Patients need access to understandable information to make more informed decisions about KDPI. METHODS: We developed a KDPI-specific animation with input from six stakeholder groups and conducted a one-group pre-post study with 60 kidney transplant candidates for feasibility and acceptability to improve participant KDPI knowledge, understanding, decisional self-efficacy, and willingness to accept a KDPI > 85% kidney. Data were compared using McNemar's test and Wilcoxon signed-rank test. RESULTS: Compared with pre-animation scores, post-animation scores were significantly higher for KDPI knowledge for the entire cohort (4.6 vs 6.1, P < .001) and across different levels of age, educational attainment, health literacy, vintage, and technology access. The frequency of positive responses increased pre-post animation for KDPI understanding (55% vs 83%, P < .001) and decisional self-efficacy (47% vs 75%, P < .001). However, willingness to accept KDPI > 85% kidneys (32% vs 36%, P = .83) increased by 2%. After viewing simplifyKDPI, >90% indicated positive ratings on ease of watching, understanding, and engaging. CONCLUSION: In collaboration with stakeholders, an educational animation about KDPI was developed that was well-received and is promising to impact knowledge.

Development and Preliminary Evaluation of IRD-1-2-3: An Animated Video to Inform Transplant Candidates About Increased Risk Donor Kidneys.

BACKGROUND: Current educational interventions about increased risk donors (IRDs) are less effective in improving knowledge among African American (AA) kidney transplant candidates compared to other races. We aimed to develop an IRD educational animated video culturally responsive to AAs and conduct feasibility testing. METHODS: Between May 1, 2018, and June 25, 2018, we iteratively refined a culturally targeted video for AAs with input from multiple stakeholders. We then conducted a one group pre-post study between June 28, 2018, and October 29, 2018, with 40 kidney transplant candidates to assess the feasibility and acceptability of the video to improve participant knowledge and obtain feedback about IRD understanding, self-efficacy, and willingness. A mixed population was chosen to obtain race-specific acceptability data and efficacy estimates to inform a larger study. RESULTS: Three themes emerged and informed video development; misattribution of IRD to kidney quality, IRD terminology as a barrier to meaningful understanding, and variable reactions to a 1:1000 risk estimate. The study cohort was 50% AA. Median IRD knowledge increased from 5 to 7.5 (P = 0.001) overall and from 5 to 7 (P < 0.001) among AAs. The frequency of positive responses increased pre-post video for understanding of (23% vs 83%, P < 0.001), self-efficacy to decide about (38% vs 70%, P < 0.001), and willingness to accept IRD kidneys (25% vs 72%, P < 0.001). Over 90% of participants provided positive ratings on each of the 6 acceptability items. CONCLUSIONS: A culturally responsive IRD educational video was developed in collaboration with key stakeholders. Quantitative results indicate the video was acceptable and promising to impact IRD knowledge among AA and non-AA kidney transplant candidates.

Development and preliminary evaluation of ilearnKAS: An animated video about kidney allocation to support transplant decision-making.

BACKGROUND: We aimed to develop and feasibility test an educational video culturally targeted to African American (AA) patients regarding kidney allocation. METHODS: We iteratively refined an animated video for AAs with multiple stakeholder input and conducted a one-group, pre-post study with 50 kidney transplant candidates to assess video feasibility and acceptability. A mixed population was chosen to obtain race-specific acceptability data and efficacy estimates for a larger study. RESULTS: Median participant age was 56 years, and 50% were AA. Comparing pre-post video scores, large knowledge effect sizes were found for the cohort (r = 0.7) and in the context of AA race (r = 0.8), low health literacy (r = 0.6), low educational achievement (r = 0.7), age >55 years (r = 0.6), dialysis vintage ≥1 year (r = 0.8), low income (r = 0.7) and low technology access (r = 0.8). Over 87% of participants provided positive ratings on each of the seven acceptability items. The frequency of positive responses increased pre-post video for kidney allocation understanding (78% vs 94%, P = 0.008), decisional self-efficacy (64% vs 88%, P < 0.001) and belief in fairness (76% vs 90%, P = 0.02). CONCLUSIONS: In collaboration with key stakeholders, a culturally targeted educational video was developed that was well received. Results are promising to impact kidney allocation knowledge among AA and non-AA kidney transplant candidates.

Kidney Transplant Evaluation: Inferences from Qualitative Interviews with African American Patients and their Providers.

BACKGROUND: Completing pre-transplant evaluation is often a barrier to kidney waiting list placement among African American (AA) patients. Interventions are needed to provide AAs with culturally sensitive, understandable information that increases their capacity to achieve placement on the kidney transplant waiting list. Research about enabling and constraining factors for patients to complete the waitlisting process is necessary to inform such interventions; however, few such studies have been conducted specific to AA patient needs. METHODS: Semistructured qualitative focus groups and interviews were conducted with 24 AA listed or transplanted patients (along with their caregivers when available) and 14 transplant providers to explore thoughts, feelings, and assumptions about transplant evaluation. Questions also probed participants' perceptions of enabling and constraining factors to wait-listing. Interviews were recorded and transcribed and inductive thematic analysis was performed to inform message content for a future educational video intervention. RESULTS: Three themes emerged from thematic content analysis: (1) transplant center support in navigating steps to wait-listing, (2) provider attitude and messaging, and (3) education about evaluation and the waiting list. Enabling factors for evaluation completion included staff assistance with completing testing, frequent communication, and positive staff messaging. Constraining factors were staff inaccessibility, patient scheduling difficulties, and misunderstanding/misinformation regarding the role of the transplant coordinator, process of and requirements for listing, and understanding allocation. CONCLUSIONS: We identified information based on patients' expressed needs and experiences managing evaluation completion. These findings are valuable in efforts going forward to empower AAs to achieve placement on the waiting list.

Enabling Conversations: African American Patients' Changing Perceptions of Kidney Transplantation.

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.