Individually tailoring education over time may help more patients, especially racial/ethnic minorities, get wait-listed and pursue deceased and living donor kidney transplant (DDKT and LDKT, respectively). We enrolled patients pursuing transplant evaluation at the University of California, Los Angeles Transplant Program into a randomized education trial. We compared the effectiveness of Your Path to Transplant (YPT), an individually tailored coaching and education program delivered at four time points, with standard of care (SOC) education on improving readiness to pursue DDKT and LDKT, transplant knowledge, taking 15 small transplant-related actions, and pursuing transplant (waitlisting or LDKT rates) over 8 months. Survey outcomes were collected prior to evaluation and at 4-and 8-months. Time to waitlisting or LDKT was assessed with at least 18 months of follow-up. At 8 months, compared to SOC, the YPT group demonstrated increased LDKT readiness (47% vs 33%, p = 0.003) and transplant knowledge (effect size [ES]=0.41, p<0.001). Transplant pursuit was higher in the YPT group (HR: 1.44, 95% CI: 1.15-1.79, p = 0.002). A focused, coordinated education effort can improve transplant-seeking behaviors and wait-listing rates. ClinicalTrials.gov registration: NCT02181114

Objectives: First-person storytelling (FPS) has the potential to engage patients in changing behavior differently than didactic education. We assessed the prevalence of FPS in health education interventions; whether published FPS research has shown improvements in attitudinal, knowledge, behavioral, or clinical outcomes; and whether randomized controlled trials (RCTs) including FPS have shown more effectiveness than non-FPS interventions. Methods: A scoping review of FPS studies published before October 2019 in five medical databases was conducted. Results: 22 out of 10,363 identified studies met eligibility criteria. FPS has been studied primarily in cancer, diabetes, and hypertension. Of the 12 RCTs, compared to controls, patients receiving FPS interventions improved attitudes (N=6 studies) and knowledge (N=1), improved health behaviors like quitting smoking (N=6), and improved clinical outcomes like lowering A1C levels (N=3). Of the 10 non-RCT studies, compared to baseline assessments, patients who received FPS interventions had improved knowledge (N=1), attitudes (N=3), clinical outcomes (N=4), and improved health behaviors (N=7). Conclusion: While rarely used, FPS interventions can improve patient health attitudes and outcomes. Future research should expand FPS to new health areas and determine best practices for developing FPS interventions. Practice Implications: FPS may be particularly effective with low income patients and racial/ethnic minorities.

Context: Early tailored transplant education could help patients make informed transplant choices. Objective: We interviewed 40 patients with chronic kidney disease (CKD) stages 3 to 5, 13 support persons, and 10 providers at Kaiser Permanente Southern California to understand: (1) barriers to transplant education and (2) transplant educational preferences and recommendations based on CKD stage and primary language spoken. Design: A grounded theory analysis identified central themes related to transplant education barriers, preferences, and recommendations. Results: Barriers included confusion about diagnosis and when transplant may be necessary, concerns about transplant risks, families’ lack of transplant knowledge, financial burdens, transportation and scheduling, and the emotional overload of chronic illness. Hispanic and Spanish-speaking participants reported difficulty in understanding transplant education and medical mistrust. Recommendations included providing general education, earlier introduction to transplant, wait-listing information, transplant education for support persons, living donation education for patients and potential donors, opportunities to meet living donors and kidney recipients, information on the benefits of transplant, recovery, and available financial resources, flexible class scheduling, online and print resources, and more provider follow-up. Spanish-speaking and Hispanic participants recommended using bilingual educators, print, video, and online resources in Spanish, and culturally responsive education. Patients with CKD stages 3 to 4 wanted information on slowing disease progression and avoiding transplant. Conclusion: Increasing access to culturally responsive transplant education in multiple languages, pairing appropriate content to the disease stage, and increasing system-wide follow-up as the disease progresses might help patients make more informed choices about transplant.

Background It is not common for people to come across a living kidney donor, let alone consider whether they would ever donate a kidney themselves while they are alive. Narrative storytelling, the sharing of first-person narratives based on lived experience, may be an important way to improve education about living donor kidney transplants (LDKTs). Developing ways to easily standardize and disseminate diverse living donor stories using digital technology could inspire more people to consider becoming living donors and reduce the kidney shortage nationally. Objective This paper aimed to describe the development of the Living Donation Storytelling Project, a web-based digital library of living donation narratives from multiple audiences using video capture technology. Specifically, we aimed to describe the theoretical foundation and development of the library, a protocol to capture diverse storytellers, the characteristics and experiences of participating storytellers, and the frequency with which any ethical concerns about the content being shared emerged. Methods This study invited kidney transplant recipients who had received LDKTs, living donors, family members, and patients seeking LDKTs to record personal stories using video capture technology by answering a series of guided prompts on their computer or smartphone and answering questions about their filming experience. The digital software automatically spliced responses to open-ended prompts, creating a seamless story available for uploading to a web-based library and posting to social media. Each story was reviewed by a transplant professional for the disclosure of protected health information (PHI), pressuring others to donate, and medical inaccuracies. Disclosures were edited. Results This study recruited diverse storytellers through social media, support groups, churches, and transplant programs. Of the 137 storytellers who completed the postsurvey, 105/137 (76.6%) were white and 99/137 (72.2%) were female. They spent 62.5 min, on average, recording their story, with a final median story length of 10 min (00:46 seconds to 32:16 min). A total of 94.8% (130/137) of storytellers were motivated by a desire to educate the public; 78.1% (107/137) were motivated to help more people become living donors; and 75.9% (104/137) were motivated to dispel myths. The ease of using the technology and telling their story varied, with the fear of being on film, emotional difficulty talking about their experiences, and some technological barriers being reported. PHI, most commonly surnames and transplant center names, was present in 62.9% (85/135) of stories and was edited out. Conclusions With appropriate sensitivity to ensure diverse recruitment, ethical review of content, and support for storytellers, web-based storytelling platforms may be a cost-effective and convenient way to further engage patients and increase the curiosity of the public in learning more about the possibility of becoming living donors.