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Living Donor Kidney TransplantationLDKT StoriesNCT06734819

Storytelling to Promote Living Donor Kidney Transplant

A study testing Storytelling Video and Standard Patient Education in people with Living Donor Kidney Transplantation and Health Equity, run by University of British Columbia at 1 site in Canada.

Not yet recruiting

Opening soon. The study is approved but enrolment has not started yet. Sites may already take enquiries.

Sites and contacts
Official record
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Trial 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… Read more about this study

Who is it for?
Ages 18 years and older
What is being tested?
Storytelling Video and Standard Patient Education
Could I receive a placebo?
No, everyone receives an active treatment
How many people
80 participants
Where
1 siteCanada
Study dates
Dec 2024to Dec 2025
Phase
Interventional
Are there results?
Not yet: the study is under way

Key requirements

Who can take part, as listed by the sponsor. Only the study team can confirm whether you are eligible, so take this list to your doctor.

  • Ages 18 years and older
  • All sexes
  • No healthy volunteers
  • Adult, Older adult

Who may be able to join

  • 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

Who cannot join

  • 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

Trial locations and contacts

1 site in 1 country. Contact the study team or a site near you to ask about taking part.

Canada1 site
  • Vancouver General Hospital

    Vancouver, British Columbia, V5Z 1M9

    Christopher Nguan, MD, 604 875 5003, chris.nguan@ubcurology.com

Other trials in Canada

About this study

Official title: Effectiveness of Digital Storytelling in Increasing Living Kidney Donor Recruitment in Canada

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.

Read the 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.

Being tested
Storytelling Video, Standard Patient Education
Keywords
Living Donor Kidney Transplantation, Health Equity, Patient Education, Narrative Medicine, Digital Storytelling
Medical subject headings
Narrative Medicine

What participants receive

What participants receive. In a randomised study each person is assigned to one group by chance.

  • Storytelling VideoBehavioural

    Also called Living Donor Storytelling Library, LDSP

    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.

  • Standard Patient EducationBehavioural

    Standard of care patient education materials include verbal didactic offered during the surgical consult and pamphlets produced by Vancouver Coastal Health.

Study groups in NCT06734819
Study groupRoleWhat they receive
ControlActive comparatorStandard of care patient education materials
Receives: Behavioral: Standard Patient Education
ExperimentalExperimental2 storytelling videos in addition to standard of care patient education materials
Receives: Behavioral: Storytelling Video; Behavioral: Standard Patient Education

What is being measured

The primary outcome is the main question the study is designed to answer.

  1. Readiness and Motivation

    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).

    Measured: Baseline + 1 month post-intervention

  2. Transplant Actions

    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).

    Measured: Baseline + 1 month post-intervention

Secondary outcomes (1)
  1. Donor Inquiries and evaluations

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

    Measured: 3 months

Timeline

From the start of the study to its completion; the mark is today. Estimated dates are the sponsor’s plan.

  1. First posted16 Dec 2024
  2. Study startDec 2024 (estimated)
  3. Primary completionAug 2025 (estimated)
  4. Study completionDec 2025 (estimated)

Resources

More details

For doctors and researchers: how the study is designed, who runs it, and its registry IDs.

Study design
Study type
Interventional
Phase
Phase N/A
Primary purpose
Other
Allocation
Randomised
Intervention model
Parallel groups
Masking
Single blind
Who is masked
Participant
Enrolment
80 participants (estimated)
IDs, dates and publications
ClinicalTrials.gov ID
NCT06734819
Sponsor's protocol ID
H23-02077
Acronym
LDKT Stories
Status last verified
Dec 2024
First submitted
7 Dec 2024
Last updated
18 Dec 2024
Results posted
No
Data monitoring committee
Yes
FDA-regulated drug
No
FDA-regulated device
No
Individual data sharing
No: No personally identifiable information will be collected on participants as the data will be unidentified, and no sensitive information will be collected.

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.

    PubMed 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.

    PubMed 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.

    PubMed 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.

    PubMed 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.

    PubMed 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.

    PubMed 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.

    PubMed 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.

    PubMed 38765593
  • Purnell TS, Hall YN, Boulware LE. Understanding and overcoming barriers to living kidney donation among racial and ethnic minorities in the United States. Adv Chronic Kidney Dis. 2012 Jul;19(4):244-51. doi: 10.1053/j.ackd.2012.01.008.

    PubMed 22732044
  • Hamid M, Gill J, Okoh P, Yanga N, Gupta V, Zhang JC, Singh N, Matelski J, Boakye P, James CE, Waterman A, Mucsi I. Knowledge About Renal Transplantation Among African, Caribbean, and Black Canadian Patients With Advanced Kidney Failure. Kidney Int Rep. 2023 Sep 22;8(12):2569-2579. doi: 10.1016/j.ekir.2023.09.018. eCollection 2023 Dec.

    PubMed 38106596
  • Alsahafi M, Leung L, Partovi N, Yee J, Yoshida EM. Racial differences between solid organ transplant donors and recipients in British Columbia 2005-2009: a follow-up study since the last analysis in 1993-1997. Transplantation. 2013 Jun 15;95(11):e70-1. doi: 10.1097/TP.0b013e3182928261. No abstract available.

    PubMed 23732288
  • de Groot IB, Veen JI, van der Boog PJ, van Dijk S, Stiggelbout AM, Marang-van de Mheen PJ; PARTNER-study group. Difference in quality of life, fatigue and societal participation between living and deceased donor kidney transplant recipients. Clin Transplant. 2013 Jul-Aug;27(4):E415-23. doi: 10.1111/ctr.12165. Epub 2013 Jun 30.

    PubMed 23808752

Questions about this trial

What is this clinical trial studying?

A study testing Storytelling Video and Standard Patient Education in people with Living Donor Kidney Transplantation and Health Equity, run by University of British Columbia at 1 site in Canada.

The full registered description is in the About this study section and the official record.

Who may be eligible to take part?

The sponsor lists 4 inclusion and 3 exclusion criteria. Eligibility is decided by the study team after screening, so read the full criteria and contact a listed site.

Is this clinical trial currently recruiting?

The record says: opening soon, as of the sponsor's last update on 18 Dec 2024. Status can change between updates, so confirm with the study contact before making plans.

Where is the study taking place?

The record lists 1 site in Canada. Whether a site is taking part right now should be confirmed with that site. See every site.

What are the possible benefits and risks?

They depend on the study and the treatment, and no study can promise a benefit. The study team explains the known risks during informed consent, before anyone joins; the record itself does not list them.

Are results available for this study?

This study is still under way. Results are not available in the source record yet.

How can a doctor refer a patient or contact the research team?

Contact Meghan He, BSc (604-838-1066, hemeghan@student.ubc.ca), or a site near the patient. AzTrials does not enrol participants or take referrals.

What does the primary outcome measure?

Readiness and Motivation (time frame: Baseline + 1 month post-intervention). The study lists 2 primary outcomes in all. It is what the study was designed to measure, not a finding.

Where can I read the original study information?

On the ClinicalTrials.gov record for NCT06734819, which also lists 12 linked publications.

Does a listing mean the treatment is approved or proven to work?

No. A listing means the study is registered. It does not show that the treatment is safe, works, or is approved by a regulator.

How often is this information updated?

AzTrials copies changed records from ClinicalTrials.gov every night and reloads the whole registry every week. The sponsor last updated this record on 18 Dec 2024.

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