Storytelling to Promote Living Donor Kidney Transplant

NCT06734819 | Not Yet Recruiting DMC

• 1 other identifier: H23-02077
• Study Type: interventional
• Target: 80
• Locations: 1 country
• Sites: 1

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.

Conditions

Living Donor Kidney Transplantation; Health Equity; Patient Education; Narrative Medicine

Keywords

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

Outcome Measures

Primary Outcomes (2)

• 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).

  Baseline + 1 month post-intervention

• 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).

  Baseline + 1 month post-intervention

Secondary Outcomes (1)

• Donor Inquiries and evaluations

  3 months

Other Outcomes (2)

• Health literacy and cultural safety

  Immediately post-intervention

• Transplant knowledge

  Baseline

Study Arms (2)

Control

ACTIVE COMPARATOR

Standard of care patient education materials

Behavioral: Standard Patient Education

Experimental

EXPERIMENTAL

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

Behavioral: Storytelling Video; Behavioral: Standard Patient Education

Interventions

Storytelling Video 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.

Also known as: Living Donor Storytelling Library, LDSP

Experimental

Standard Patient Education BEHAVIORAL

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

Control; Experimental

Eligibility Criteria

• Age: 18 Years+
• Sex: all
• Healthy Volunteers: No
• Age Groups: Adult (18-64), Older Adult (65+)

You may qualify if:

• Waitlisted and newly referred kidney transplant candidates at the Vancouver Kidney Transplant Program
• years of age or older
• Able to provide informed consent
• English literate

You may not qualify if:

• 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

Sponsors & Collaborators

• University of British Columbia: lead
• Houston Methodist Transplant & Surgery Center of Excellence: collaborator

Study Sites (1)

Vancouver General Hospital

Vancouver, British Columbia, V5Z 1M9, Canada

Location

Related Publications (12)

• 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 RESULT

• 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 RESULT

• 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 RESULT

• 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 RESULT

• 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 RESULT

• 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 RESULT

• 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 RESULT

• 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 RESULT

• 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.

  PMID: 22732044 RESULT

• 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.

  PMID: 38106596 RESULT

• 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.

  PMID: 23732288 RESULT

• 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.

  PMID: 23808752 RESULT

MeSH Terms

Conditions

Narrative Medicine

Condition Hierarchy (Ancestors)

Narration; Communication; Behavior

Central Study Contacts

Meghan He, BSc

CONTACT

604-838-1066; hemeghan@student.ubc.ca

Study Design

• Study Type: interventional
• Phase: not applicable
• Allocation: RANDOMIZED
• Masking: SINGLE
• Who Masked: PARTICIPANT
• Purpose: OTHER
• Intervention Model: PARALLEL
• Sponsor Type: OTHER
• Responsible Party: PRINCIPAL INVESTIGATOR
• PI Title: Principal Investigator

Study Record Dates

• First Submitted: December 7, 2024
• First Posted: December 16, 2024
• Study Start: December 1, 2024
• Primary Completion: August 1, 2025
• Study Completion: December 1, 2025
• Last Updated: December 18, 2024

Record last verified: 2024-12

Data Sharing

• IPD Sharing: Will not share

Locations

CA (1)