Living Donor Kidney Transplantation, Health Equity, Patient Education, Narrative Medicine
Conditions
Keywords
Living Donor Kidney Transplantation, Health Equity, Patient Education, Narrative Medicine, Digital Storytelling
Brief summary
This study will examine the effectiveness of first-person storytelling in encouraging patients with end-stage renal disease to pursue Living Donor Kidney Transplant (LDKT). The Living Donation Storytelling Library LDSP is a library of videos from donors and recipients sharing their transplant stories, serving as a narrative-based transplant education resource. This study will investigate if exposure to the LDSP changes patient readiness and motivation to pursue LDKT to ultimately increase the number of donor inquiries and donor evaluations. This study will also test if the LDSP serves as a health-literate and culturally safe education approach that can effectively support racialized communities who have a disproportionately higher need for LDKT.
Detailed description
Background: In Canada, racialized communities are 50 to 75 percent less likely to be referred for living donor kidney transplant (LDKT), identify donors, complete evaluation, and receive transplant in comparison to white patients. Several narrative-based transplant education interventions have proven to be effective in increasing LDKT pursuit among Black patients in America. However, these education interventions are labour- and time-intensive and fail to reach the general public outside the location of transplant education. Efficacy of interpersonal education interventions have also yet to be evaluated in Canadian minority populations, predominantly comprised of South Asian, East Asian and Indigenous communities. Objective: The aim of this study is to examine the effectiveness of a narrative-based LKDT education intervention, the Living Donation Storytelling Library, in increasing transplant knowledge, health literacy, and recruitment of living donors. Secondarily, this study aims to compare hereterogeneity in viewer responses across race and gender to identify potential targeted narrative interventions for LKDT education. Method: Two-arm randomized control trial with 80 prospective living donor kidney transplant recipients at Vancouver General Hospital in collaboration with Houston Methodist Hospital and Weill Cornell Medical Center.
Interventions
BEHAVIORALStorytelling Video
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.
BEHAVIORALStandard Patient Education
Standard of care patient education materials include verbal didactic offered during the surgical consult and pamphlets produced by Vancouver Coastal Health.
Sponsors
Houston Methodist Transplant & Surgery Center of Excellence
University of British Columbia
Study design
Allocation
RANDOMIZED
Intervention model
PARALLEL
Primary purpose
OTHER
Masking
SINGLE (Subject)
Eligibility
Sex/Gender
ALL
Age
18 Years to No maximum
Healthy volunteers
No
Inclusion criteria
* Waitlisted and newly referred kidney transplant candidates at the Vancouver Kidney Transplant Program * 18 years of age or older * Able to provide informed consent * English literate
Exclusion criteria
* Inability to understand English and provide informed consent * Transplant candidates excluded from transplantation based on clinical criteria or other contraindications for transplant * Unwilling to disclose information on race or ethnicity
Design outcomes
Primary
| Measure | Time frame | Description |
|---|---|---|
| Readiness and Motivation | Baseline + 1 month post-intervention | 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). |
| Transplant Actions | Baseline + 1 month post-intervention | 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). |
Secondary
| Measure | Time frame | Description |
|---|---|---|
| Donor Inquiries and evaluations | 3 months | Examine if allowing waitlisted transplant patients to watch two videos from the LDSP will increase the number of donor inquiries and donor evaluations. |
Other
| Measure | Time frame | Description |
|---|---|---|
| Health literacy and cultural safety | Immediately post-intervention | 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. |
| Transplant knowledge | Baseline | Knowledge related to LDKT was assessed using the validated KART 2.0 Transplant Knowledge Subscale. This subscale is comprised of 16-question multiple choice questions regarding basic facts about LDKT (eg, Compared to transplants from donors who have died, how long do transplants from living donors last?). In our study, wording of some questions were modified to reflect the local healthcare system context. Scores were calculated by summing the number of correct responses to obtain a range from 0 (lowest LDKT knowledge) to 16 (highest LDKT knowledge). |
Countries
Canada
Contacts
Primary ContactMeghan He, BSc
Outcome results
None listed