Live Donor Advocacy Training + Social Media for Kidney Failure

(ENGAGE Trial)

Recruiting at 1 trial location

Overseen By Komal Kumar, MPH

Age: 18+

Sex: Any

Trial Phase: Academic

Sponsor: Johns Hopkins University

Disqualifiers: Live donors, Previous transplant

No Placebo Group All trial participants will receive the active study treatment (no placebo)

Compensation: Varies

Number of Visits: 6

775 Participants Needed

What You Need to Know Before You Apply

What is the purpose of this trial?

This pilot study will be a clinical trial to test the feasibility and effectiveness of an educational intervention and a mobile health intervention in adults with end stage renal disease (ESRD) who have not yet identified a potential live donor.

Will I have to stop taking my current medications?

The trial information does not specify whether you need to stop taking your current medications.

Is using social media and apps for finding kidney donors safe?

The use of social media and apps like Facebook for finding kidney donors is generally considered safe, with studies focusing on ethical design and providing necessary information to ensure informed consent. However, there is limited data specifically addressing safety, and future studies are needed to explore this aspect further. ^{1 2 3 4 5}

How does the Live Donor Advocacy Training + Social Media treatment differ from other treatments for kidney failure?

This treatment is unique because it combines advocacy training with a Facebook app to help kidney transplant candidates find live donors by educating and empowering them and their social networks. Unlike traditional methods, it uses social media to facilitate communication and increase the likelihood of finding a donor, making it a novel approach in the field of kidney transplantation. ^{1 3 4 6 7}

What data supports the effectiveness of the treatment Facebook App, Live Donor Champion + Facebook App for kidney failure?

Research shows that using social media, like Facebook, can help people find potential kidney donors by allowing them to share their need for a donor with a wide audience. A study found that people using a Facebook app were more likely to have a donor come forward compared to those who didn't use the app. ^{1 2 3 8 9}

Who Is on the Research Team?

Andrew Cameron, MD PhD

Principal Investigator

Johns Hopkins University

Are You a Good Fit for This Trial?

This trial is for adults over 18 with end-stage renal disease (ESRD) who've been on the kidney transplant waitlist in the past year without a live donor. It's open to English speakers at Johns Hopkins and University of Alabama, and English or Spanish speakers at Northwestern University.

Inclusion Criteria

I am open to considering new organ donors or becoming more comfortable with the idea of receiving a donation.

I am over 18, need a kidney transplant, and have no live donors.

Exclusion Criteria

Those with a previous kidney transplant will be excluded

Candidates with live donors currently under evaluation for donation will be excluded.

Timeline for a Trial Participant

Screening

Participants are screened for eligibility to participate in the trial

2-4 weeks

Intervention

Participants receive educational and mobile health interventions, including the Live Donor Champion program and/or Facebook app

6 months

6 monthly sessions (in-person) for LDC program, 1 focus group session (in-person) for Facebook app

Follow-up

Participants are monitored for live donor kidney transplantation and other outcomes

1 year

What Are the Treatments Tested in This Trial?

Interventions

• Facebook App
• Live Donor Champion + Facebook App

Trial Overview The study tests an educational program plus a Facebook app versus just the app to see if they help ESRD patients find kidney donors. The goal is to check how well these methods work in helping patients get live donors.

How Is the Trial Designed?

Group I: Standard of Care Active Control 1 Intervention

Standard of Care does not include any of the interventions detailed above, but rather normal routine care as this is the control group.

Group II: Live Donor Champion + Facebook App Active Control 1 Intervention

The LDC program consists of 6 monthly sessions of approx. 1 hour each. Each LDC session is led by a transplant physician or clinical coordinator. LDC sessions incorporate formal didactics, active-participant learning, personal stories, moderated group discussions, role-playing, and other skill-building exercises. LDC sessions are as follows: 1) education about ESRD, KT, and LDKT 2) communication skills building 3) Exploring social networks 4) sharing successful donor and recipient stories 5) encouraging candidate self-efficacy. At session 3, the the Facebook app will be incorporated and given to candidates. The Facebook app provides step-by-step instructions for creating a Facebook post that details each waitlist candidate's struggle with ESRD and their need for a live donor. The post is then uploaded to Facebook so it can be shared with the candidate's Facebook social network.

Group III: Facebook App Active Control 1 Intervention

The Facebook app provides step-by-step instructions for creating a Facebook post that details each waitlist candidate's struggle with ESRD and their need for a live donor. The post is then uploaded to Facebook so it can be shared with the candidate's Facebook social network. The Facebook App prompts users with specific questions to create a narrative. Links to supplemental resources are auto-populated into the post to provide anyone that views the post with vetted information about the risks, benefits, and process of live donation. Candidates using the Facebook app attend one focus group session held at the transplant center where they are provided with verbal instructions and visual demonstrations of installation and use of the Facebook app.

Who Is Running the Clinical Trial?

Johns Hopkins University

Lead Sponsor

Trials

2,366

Recruited

15,160,000+

Northwestern University

Collaborator

Trials

1,674

Recruited

989,000+

National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK)

Collaborator

Trials

2,513

Recruited

4,366,000+

University of Alabama at Birmingham

Collaborator

Trials

1,677

Recruited

2,458,000+

Published Research Related to This Trial

The KidneyTIME intervention significantly increased living-donor kidney transplantation (LDKT) knowledge by 71% and communication self-efficacy by 48% among 82 kidney candidates and their caregivers, indicating its effectiveness in educating participants.

Participants rated the KidneyTIME videos highly in terms of understandability and engagement, with 100% willing to recommend the program, although the intervention did not lead to an increase in living donor inquiries during the COVID-19 pandemic.

NCBI (Pubmed)

pubmed.ncbi.nlm.nih.gov

Video education to facilitate patient outreach about living kidney donation: A proof of concept. Kayler, LK., Seibert, RE., Dolph, BA., et al.[2021]

The Kidney Coach Program (KCP) significantly increased the number of living donor inquiries among transplant candidates, with 80% of KCP participants receiving at least one inquiry compared to only 38% of historical controls.

The study suggests that training candidates and their advocates on how to discuss living donation can effectively raise awareness and improve donor recruitment, highlighting the need for transplant programs to implement such training.

NCBI (Pubmed)

pubmed.ncbi.nlm.nih.gov

Increasing living donation by implementing the Kidney Coach Program. LaPointe Rudow, D., Geatrakas, S., Armenti, J., et al.[2020]

Citations

1. Denmark pubmed.ncbi.nlm.nih.gov

Video education to facilitate patient outreach about living kidney donation: A proof of concept. [2021]

2. Denmark pubmed.ncbi.nlm.nih.gov

Identifying potential kidney donors using social networking web sites. [2022]

3. Switzerland pubmed.ncbi.nlm.nih.gov

Acceptability of a Mobile-Health Living Kidney Donor Advocacy Program for Black Wait-Listed Patients. [2021]

4. United States pubmed.ncbi.nlm.nih.gov

Impact of Social Media on Self-Referral Patterns for Living Kidney Donation. [2022]

5. United States pubmed.ncbi.nlm.nih.gov

A Smartphone App for Increasing Live Organ Donation. [2023]

6. United States pubmed.ncbi.nlm.nih.gov

Beyond the Billboard: The Facebook-Based Application, Donor, and Its Guided Approach to Facilitating Living Organ Donation. [2023]

7. Canada pubmed.ncbi.nlm.nih.gov

The Impact of the mKidney mHealth System on Live Donor Follow-Up Compliance: Protocol for a Randomized Controlled Trial. [2021]

8. United States pubmed.ncbi.nlm.nih.gov

Addressing Racial Disparities in Live Donor Kidney Transplantation Through Education and Advocacy Training. [2022]

9. Denmark pubmed.ncbi.nlm.nih.gov

Increasing living donation by implementing the Kidney Coach Program. [2020]