Storytelling to Promote Living Donor Kidney Transplant

NCT ID: NCT06734819

Last Updated: 2024-12-18

Study Results

Results pending

The study team has not published outcome measurements, participant flow, or safety data for this trial yet. Check back later for updates.

Basic Information

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Recruitment Status

NOT_YET_RECRUITING

Clinical Phase

NA

Total Enrollment

80 participants

Study Classification

INTERVENTIONAL

Study Start Date

2024-12-31

Study Completion Date

2025-12-31

Brief Summary

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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

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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.

Conditions

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Living Donor Kidney Transplantation Health Equity Patient Education Narrative Medicine

Keywords

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Living Donor Kidney Transplantation Health Equity Patient Education Narrative Medicine Digital Storytelling

Study Design

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Allocation Method

RANDOMIZED

Intervention Model

PARALLEL

Primary Study Purpose

OTHER

Blinding Strategy

SINGLE

Participants

Study Groups

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Control

Standard of care patient education materials

Group Type ACTIVE_COMPARATOR

Standard Patient Education

Intervention Type BEHAVIORAL

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

Experimental

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

Group Type EXPERIMENTAL

Storytelling Video

Intervention Type BEHAVIORAL

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 Education

Intervention Type BEHAVIORAL

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

Interventions

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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 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.

Intervention Type 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.

Intervention Type BEHAVIORAL

Other Intervention Names

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Living Donor Storytelling Library LDSP

Eligibility Criteria

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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
Minimum Eligible Age

18 Years

Eligible Sex

ALL

Accepts Healthy Volunteers

No

Sponsors

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Houston Methodist Transplant & Surgery Center of Excellence

UNKNOWN

Sponsor Role collaborator

University of British Columbia

OTHER

Sponsor Role lead

Responsible Party

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Meghan He

Principal Investigator

Responsibility Role PRINCIPAL_INVESTIGATOR

Locations

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Vancouver General Hospital

Vancouver, British Columbia, Canada

Site Status

Countries

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Canada

Central Contacts

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Meghan He, BSc

Role: CONTACT

Phone: 604-838-1066

Email: [email protected]

Facility Contacts

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Christopher Nguan, MD

Role: primary

References

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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.

Reference Type RESULT
PMID: 21895370 (View on PubMed)

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.

Reference Type RESULT
PMID: 35332061 (View on PubMed)

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.

Reference Type RESULT
PMID: 35755303 (View on PubMed)

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.

Reference Type RESULT
PMID: 33440381 (View on PubMed)

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.

Reference Type RESULT
PMID: 32480362 (View on PubMed)

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.

Reference Type RESULT
PMID: 21736237 (View on PubMed)

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.

Reference Type RESULT
PMID: 38613542 (View on PubMed)

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.

Reference Type RESULT
PMID: 38765593 (View on PubMed)

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.

Reference Type RESULT
PMID: 22732044 (View on PubMed)

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.

Reference Type RESULT
PMID: 38106596 (View on PubMed)

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.

Reference Type RESULT
PMID: 23732288 (View on PubMed)

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.

Reference Type RESULT
PMID: 23808752 (View on PubMed)

Provided Documents

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Document Type: Study Protocol and Statistical Analysis Plan

View Document

Document Type: Informed Consent Form

View Document

Other Identifiers

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H23-02077

Identifier Type: -

Identifier Source: org_study_id