Standard of care patient education materials

2 storytelling videos in addition to standard of care patient education materials

The Living Donation Storytelling Project (LDSP) is an online video library of living donation first-person narratives aiming to inspire more people to consider LDKT (https://livingdonationstories.org/).17 As of 2020, the library has 118 stories from living donors and kidney recipients sharing their experiences with the pursuit, challenges and outcomes of transplant.18,19 Four videos were selected from the LDSP and edited to standardized duration and thematic content. Videos were cut to three minutes in length and covered the topics of 1) challenges faced when seeking LDKT, 2) life after LDKT and 3) advice for other patients considering LDKT.

Elucidate if allowing waitlisted transplant patients to watch two videos from the LDSP will increase their motivation in pursuing LDKT. This was assessed using the validated Decisional Balance Scale measuring perceived pros and cons of pursuing LDKT. Following the prompt, "How important is this statement to your decision about living donor transplant?" was a set of 6 perceived benefits of LDKT (eg, "With a living donor transplant, I will be able to contribute to my family and friends sooner") and 6 perceived disadvantages (eg, "I don't want to involve anyone else in my health problems"). Answer choices were "1: not important," "2: slightly important," "3: important," "4: very important," "5: extremely important." Total attitude scores were calculated by subtracting the sum of perceived disadvantage scores from the sum of perceived advantage scores to obtain a range from -30 (most negative attitude towards LDKT) to +30 (most positive attitude towards LDKT).

Elucidate if allowing waitlisted transplant patients to watch two videos from the LDSP will change their actions towards pursuing LDKT. Pro-transplant behaviors were assessed using the validated Stage of Change Scale. Seven actions related to the pursuit of LDKT were listed (eg, "generally talk to people about my interest in transplant," "ask a potential donor directly to be tested"), and participants were asked if they "1: don't plan on doing this," "2: plan on doing this," or "3: already done this." Scores were calculated by summing survey responses to obtain a range from 0 (least number of actions completed in the pursuit of LDKT) to 21 (most number of actions completed in the pursuit of LDKT).

Examine if allowing waitlisted transplant patients to watch two videos from the LDSP will increase the number of donor inquiries and donor evaluations.

Test if the LDSP serves as a health-literate and culturally safe education approach that can effectively support racialized communities in pursuing LDKT.

Perceived cultural safety, health literacy accessibility, and impact of the storytelling videos were assessed using 7 prompts (eg, "After viewing the video, I feel less alone in my transplant pathway") with answer choices "1: strongly disagree," "2: disagree," "3: neutral," "4: agree," "5: strongly agree." Following survey completion, participants were invited to elaborate on their responses in an open-ended response section.