Effectiveness of Digital Storytelling in Increasing Living Kidney Donor Recruitment in Canada
Phase: NA
Conditions: Living Donor Kidney Transplantation, Health Equity, Patient Education, Narrative Medicine
Sponsor: University of British Columbia

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Division of Urology 
 
PARTICIPANT INFORMATION AND CONSENT FORM 
 
Title of Study: Effectiveness of Digital Storytelling in Increasing Living Kidney Donor Recruitment 
in Canada 
  
Principal Investigator: 
Meghan He, BSc | Medical Student, Faculty of Medicine, UBC | hemeghan@student.ubc.ca, 604 838-
1066 
 
Co-Investigators: 
Dr. Christopher Nguan, MD| Associate Professor, Urologic Sciences, UBC | 
chris.nguan@ubcurology.com, 604-875-5003 
Dr. Erika Escamilla, MD | Research Assistant, Urologic Sciences, UBC | tram.nguyen@cw.bc.ca, 604-
875-2291 
Dr. David Harriman, MD | Assistant Professor, Urologic Sciences, UBC | 
david.harriman@ubcurology.com 
 
 
Background and Study Justification 
In Canada, more than 48,000 patients live with end-stage kidney disease (ESKD) and 29,000 
receive weekly dialysis (1). The benefit of kidney transplant, especially a living donor kidney 
transplant (LDKT), for ESKD patients has been well-established to increase both length and quality of 
life (2-8). However, the number of solid organ kidney transplants has failed to match the increasing 
number of ESKD patients in Canada (1). There is thus a large gap between the need for organs and 
the number of transplants, resulting in 3% of patients dying on the organ waitlist (1). 
         
The need for LDKT is even higher among racialized communities than white patients. 
Indigenous, East and South Asian, African, Caribbean, and Black communities are 50 to 75 percent 
less likely to be referred for LDKT, identify donors, complete evaluation, and receive transplant in 
comparison to white patients in Canada (1). In the United States, African American patients are less 
likely to receive LDKT than white patients at every transplant center in the country (9). A recent 
American Society of Transplantation Consensus Conference called for improved transplant education 
and outreach efforts to target racial barriers to LDKT (10). 
         
Multilevel barriers to LDKT transplant among minority populations have been identified (11). 
At the individual recipient-donor level, barriers include medical mistrust, low health literacy, 
religious concerns, and clinical insuitability for donation. At the healthcare provider level, barriers 
include a lack of cultural competency in transplant education, racially biased perceptions of donation 
suitability, and limited time for healthcare staff to provide education that addresses racial disparities 
(12-15). And finally, at the population-community level, there exists a high chronic disease burden 
among minority populations due to social determinants of health that may reduce the potential donor 
pool for racialized potential recipients (16-19). Low community awareness about the benefits of and 

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need for LDKT, low availability of mandated sick leave from work and donor reimbursement further 
decreases the accessibility of LDKT among racialized populations (20).  
         
Standard of care didactic LKDT education materials have faced numerous health literacy and 
sociocultural barriers to supporting racialized patients with ESKD (21-23). Namely, no significant 
change in donation rates resulted from a targeted public education campaign about organ donation in 
the East Asian communities in British Columbia, Canada (24). This demonstrates the need for 
culturally appropriate education on kidney transplant that reaches beyond didactic teaching methods. 
         
Storytelling holds the promising potential to close the gap in LDKT access across diverse 
communities. Recent research has posited that first-person storytelling (FPS) overcomes health 
literacy and sociocultural barriers to breast cancer, diabetes, hypertension, and smoking cessation 
interventions (25-31). Several narrative-based transplant education interventions have also proven to 
be effective in increasing LDKT pursuit among Black patients in America (32-35).  
While effective, these education interventions are labour and time intensive and fail to reach 
the general public and social circles who are not present at the location of transplant education (36). 
Additionally, the efficacy of interpersonal education interventions has yet to be evaluated in 
Canadian minority populations, predominantly comprised of South Asian, East Asian and Indigenous 
communities (37). There is thus a need to analyze the impact of humanities-based LDKT education to 
narrow the gap in LDKT access in Canada without burdening already limited healthcare resources. 
         
The Living Donation Storytelling Project (LDSP) is an online video library of living donation 
first-person narratives aiming to inspire more people to consider becoming living donors (36). As of 
2020, the library has 118 stories from living donors and kidney recipients sharing their experiences 
with the challenges, fears, and joys of transplant (36). LDSP is a health-literate and culturally safe 
approach to LDKT education by virtue of storyteller diversity and its patient-driven approach. The 
library thus holds the potential to support minority groups in learning about LDKT as a supplement 
to traditional educational strategies without additional burden for healthcare providers. 
 
Study Purpose 
The purpose of this study is to test the effectiveness of the LDSP as a narrative-based transplant 
education intervention in encouraging patients with ESKD to pursue LDKT. We 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. We 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. 
 
 
 

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Study Objectives 
The objectives of this study are to:  
1: Elucidate if allowing waitlisted transplant patients to watch two videos from the LDSP will 
increase their readiness and motivation to pursue LDKT.  
2: Examine if allowing waitlisted transplant patients to watch two videos from the LDSP will increase 
the number of donor inquiries and donor evaluations.  
3: Test if the LDSP serves as a health-literate and culturally safe education approach that can 
effectively support racialized communities in pursuing LDKT.  
  
Outcomes 
Outcomes 
Description 
Timeline 
Readiness and 
motivation to pursue 
LDKT 
7 questions assessing stage of change 
12 questions assessing decisional balance 
Baseline + 1-month post-
intervention survey 
Transplant 
Knowledge 
16 questions assessing knowledge about LDKT 
Video Preference 
Rate liking after each video 
Rate which of the two videos they preferred 
Immediate post-
intervention survey 
Material Accessibility 
1 question assessing ease of understanding 
LDSP stories 
Cultural safety 
2 questions assessing LDSP’s respect for 
cultural diversity and trustworthiness 
Video Impact 
7 questions assessing patient’s attitudes 
towards LDSP 
Donor Inquiries 
Requests for more information about living 
donation to the transplant nurse coordinator 
3-month post 
intervention EMR review 
Donor Evaluation 
Initiation of the first phase of the clinical 
pathway for living donor evaluation 
 
Design 
We will conduct a pilot parallel-group, 2-arm randomized control trial comparing the impact of 
standard LDKT patient education and narratives from the Living Donation Storytelling Project 
(LDSP) on the attitudes and behaviors of LDKT candidates. 
 
Population 
Inclusion Criteria 
• 
Waitlisted and newly referred kidney transplant candidates at the Vancouver Kidney 
Transplant Program 
• 
18 years of age or older 

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• 
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 
 
Recruitment 
Study participants will be recruited from Dr. Christopher Nguan and Dr. David Harriman’s transplant 
clinics at Vancouver General Hospital with fully informed consent. Prospective participants will be 
identified by Dr. Nguan and Dr. Harriman via chart review. A research assistant will describe the 
study objectives and methods, provide participants with a study information sheet, and ask them if 
they are interested in participating. 
 
Details of Study Procedures 
Participants visiting the transplant clinic at the Vancouver General Hospital will be asked to 
complete a survey on REDCap following their physician’s visit to document their demographics, 
readiness to pursue transplant, and stage of change in pursuing transplant. Transplant candidates will 
be randomly assigned to 1 of 2 conditions: (1) a control group that will receive standard-of-care 
transplant education, and (2) an intervention group that will receive two LDSP videos as a 
supplement to the standard education.  
 
Participants of the intervention group who self-identified as Caucasian or East Asian on the baseline 
demographics survey will be shown a series of two videos selected based on race concordance 
between the viewer (participant) and the storyteller: (1) race non-concordant, (2) race concordant 
video. Gender will be concordant for all participant-video pairs. The non-concordant video will be 
shown prior to the concordant video for all participants, and participants will be asked to rate their 
liking of each video after viewing them one by one. Participants who self-identified as an ethnicity 
other than Caucasian or East Asian on the baseline demographics survey will be randomly shown two 
race non-concordant videos. All participants in the intervention arm will also be advised on standard 
program resources for living donation options. 
 
Patients of the control group will be counseled in standard fashion and connected to recognized 
resources for living donation options. 
 
A post-intervention surveys will be given via email 1 month after the clinic visit to document their 
readiness and motivation to pursue LDKT.  
 
3-month post-intervention, we will conduct a chart review to document the number of donor 
inquiries received and donor evaluations initiated.  
 
Statistical Analysis 

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Basic descriptive statistics on participants will be reported as percentages, means, medians and 
standard deviatiosn. Differences between LDSP versus standard education groups in pre- to 
postintervention changes in motivation and readiness to pursue LDKT will be examined using linear 
regression. Results will be summarized as odds ratios and 95% confidence intervals. All analyses will 
be conducted using R statistical software. 
 
Planned sample size: A convenience sample of 80 patients will be recruited. 
 

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