Storytelling to Promote Living Donor Kidney Transplant
For patients and families
In plain language
An automatic summary of structured registry data. It is an orientation aid, not a substitute for the official protocol or a physician assessment.
- What is being studied
- The protocol lists: Storytelling Video, Standard Patient Education.
- Who it may be relevant to
- Registry conditions: Living Donor Kidney Transplantation, Health Equity, Patient Education, Narrative Medicine. Basic parameters: from 18 years · All.
- What needs checking
- Age, condition and sex are only basic indicators. Prior treatment, laboratory values and other mandatory requirements appear in the eligibility criteria below.
- Where it takes place
- Canada
- Next step
- Save the trial, show it to the treating physician, and confirm current recruitment with the study center. Costs, documents and travel →
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Official title
Effectiveness of Digital Storytelling in Increasing Living Kidney Donor Recruitment in Canada
Overview
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
- Behavioral Storytelling 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 min - Behavioral Standard Patient Education
Standard of care patient education materials include verbal didactic offered during the surgical consult and pamphlets produced by Vancouver Coastal Health.
Primary outcome measures
- Readiness and Motivation [Time frame: Baseline + 1 month post-intervention]
- Transplant Actions [Time frame: Baseline + 1 month post-intervention]
Secondary outcome measures (1)
- Donor Inquiries and evaluations [Time frame: 3 months]
Eligibility criteria
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
Criteria are shown verbatim from the registry (in English). Final eligibility is always assessed by the study center.
Healthy volunteers: No
Study design
- Allocation
- Randomized
- Model
- Parallel assignment
- Masking
- Single blind
- Primary purpose
- Other
Study locations
Canada · 1 center
- Vancouver General Hospital — Vancouver
Publications
- McQueen A, Kreuter MW, Kalesan B, Alcaraz KI. Understanding narrative effects: the impact of breast cancer survivor stories on message processing, attitudes, and beliefs among African American women. Health Psychol. 2011 Nov;30(6):674-82. doi: 10.1037/a0025395. Epub 2011 Sep 5. PMID 21895370
- Waterman AD, Nair D, Purnajo I, Cavanaugh KL, Mittman BS, Peipert JD. The Knowledge Assessment of Renal Transplantation (KART) 2.0: Development and Validation of CKD and Transplant Knowledge Scales. Clin J Am Soc Nephrol. 2022 Apr;17(4):555-564. doi: 10.2215/CJN.11490821. Epub 2022 Mar 24. PMID 35332061
- Davis L, Iraheta YA, Ho EW, Murillo AL, Feinsinger A, Waterman AD. Living Kidney Donation Stories and Advice Shared Through a Digital Storytelling Library: A Qualitative Thematic Analysis. Kidney Med. 2022 May 21;4(7):100486. doi: 10.1016/j.xkme.2022.100486. eCollection 2022 Jul. PMID 35755303
- Wood EH, Waterman AD, Pines R. Storytelling to Inspire Dialysis Patients to Learn about Living Donor Kidney Transplant. Blood Purif. 2021;50(4-5):655-661. doi: 10.1159/000512651. Epub 2021 Jan 13. PMID 33440381
- Waterman AD, Wood EH, Ranasinghe ON, Faye Lipsey A, Anderson C, Balliet W, Holland-Carter L, Maurer S, Aurora Posadas Salas M. A Digital Library for Increasing Awareness About Living Donor Kidney Transplants: Formative Study. JMIR Form Res. 2020 Jul 21;4(7):e17441. doi: 10.2196/17441. PMID 32480362
- Boulware LE, Hill-Briggs F, Kraus ES, Melancon JK, Senga M, Evans KE, Troll MU, Ephraim P, Jaar BG, Myers DI, McGuire R, Falcone B, Bonhage B, Powe NR. Identifying and addressing barriers to African American and non-African American families' discussions about preemptive living related kidney transplantation. Prog Transplant. 2011 Jun;21(2):97-104; quiz 105. doi: 10.1177/152692481102100203. PMID 21736237
- Waterman AD, Davis LA, Al Awadhi S. Unraveling Barriers in Access to Living Donor Kidney Transplantation for South Asian Canadian Populations. Am J Kidney Dis. 2024 Jun;83(6):710-712. doi: 10.1053/j.ajkd.2024.01.519. Epub 2024 Apr 11. No abstract available. PMID 38613542
- Lui E, Gill J, Hamid M, Wen C, Singh N, Okoh P, Xu X, Boakye P, James CE, Waterman AD, Edwards B, Mucsi I. Racialized and Immigrant Status and the Pursuit of Living Donor Kidney Transplant - a Canadian Cohort Study. Kidney Int Rep. 2024 Feb 1;9(4):960-972. doi: 10.1016/j.ekir.2024.01.044. eCollection 2024 Apr. PMID 38765593
Identifiers
NCT: NCT06734819 · H23-02077