Live Donor Advocacy Training + Social Media for Kidney Failure

(ENGAGE Trial)

Not currently 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

What You Need to Know Before You Apply

What is the purpose of this trial?

This trial tests new methods to assist people with end-stage renal disease (ESRD), the final stage of chronic kidney disease, in finding live kidney donors. It examines the use of a Facebook app and an educational program called the Live Donor Champion to teach skills and share stories that may aid in locating a donor. Individuals with ESRD who are on the kidney transplant waitlist and have not yet found a potential live donor might find this trial suitable. As an unphased trial, it provides a unique opportunity to explore innovative methods that could potentially connect participants with a life-saving 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.

What prior data suggests that these interventions are safe for adults with end stage renal disease?

Research has shown that many patients with end-stage renal disease (ESRD) use social media and mobile apps to manage their health. These tools effectively help patients stay informed and involved in their care. For instance, mobile health apps are considered safe and useful for keeping patients updated about their health.

The Live Donor Champion program, which uses a Facebook app, aims to increase awareness about kidney donation by providing education through interactive sessions with health professionals. Although the safety of this specific program hasn't been directly studied, similar educational tools in healthcare are generally well-received.

Overall, past research indicates that using digital tools to connect and educate people about kidney donation appears safe. However, since the trial is in the "Not Applicable" phase, this new approach is still under study for its effectiveness and safety. ^{1 2 3 4 5}

Why are researchers excited about this trial?

Researchers are excited about these approaches because they harness social media to increase awareness and potential donor engagement for kidney failure patients. The Live Donor Champion + Facebook App combines structured, interactive learning sessions with a powerful social media tool that helps patients tell their stories and seek live donors across their networks. The Facebook App alone provides an innovative, step-by-step method for patients to craft and share their narratives, potentially reaching a wider audience than traditional methods. These strategies represent a novel way to encourage live kidney donations by leveraging personal connections and the broad reach of social media, offering a fresh angle on supporting patients beyond standard medical care.

What evidence suggests that this trial's treatments could be effective for end stage renal disease?

Research has shown that social media platforms like Facebook can effectively increase live kidney donations. One study found that sharing personal stories about needing a kidney donor on social media helps spread the word and reach more potential donors. In this trial, one group of participants will use the Facebook App, which provides step-by-step instructions for creating a Facebook post about their need for a live donor. Another group will participate in the Live Donor Champion program, which combines education and storytelling with the use of Facebook to help patients feel more confident when seeking donors. This approach makes it easier for patients to express their needs and connect with potential donors. Early findings suggest that these methods raise awareness and may improve the chances of finding a live donor. ^{1 2 6 7 8}

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. pmc.ncbi.nlm.nih.gov pmc.ncbi.nlm.nih.gov/articles/PMC7772070/

Mobile Health App With Social Media to Support Self ... The aim of this study was to evaluate the effectiveness of wearable devices, a health management platform, and social media at improving the self-management of ...

2. onlinelibrary.wiley.com onlinelibrary.wiley.com/doi/10.1111/nep.12780

User‐driven conversations about dialysis through ... We carried out a qualitative thematic analysis of the wall posts of a public Facebook group focused on dialysis to identify some of the major themes discussed.

3. pmc.ncbi.nlm.nih.gov pmc.ncbi.nlm.nih.gov/articles/PMC6457277/

Social Networks and Mobile Applications Use in Young ... 69.9% had chronic KD out of which 17.4% had undergone a kidney transplant while 9% were on dialysis. 69.6% of the participants affirmed the need ...

4. bmcmedinformdecismak.biomedcentral.com bmcmedinformdecismak.biomedcentral.com/articles/10.1186/s12911-024-02567-3

Impact of mobile application and outpatient follow-up on renal ... This study aimed to investigate whether using a mobile application combined with traditional outpatient follow-up can improve health outcomes of patients with ...

5. mcpdigitalhealth.org mcpdigitalhealth.org/article/S2949-7612(24)00111-1/fulltext

The Effectiveness of Telehealth Intervention on Chronic ... To evaluate the effectiveness of telehealth programs on dietary habits, quality of life, renal function, and blood pressure in adults with chronic kidney ...

6. pmc.ncbi.nlm.nih.gov pmc.ncbi.nlm.nih.gov/articles/PMC11269191/

Mobile health management among end stage renal disease ... Our findings that mobile health management has been widely used in disease management of end-stage renal disease patients, with rich management content and ...

7. researchgate.net researchgate.net/publication/332204228_Social_Networks_and_Mobile_Applications_Use_in_Young_Patients_With_Kidney_Disease

(PDF) Social Networks and Mobile Applications Use in ... Objective: To evaluate the use and benefits of social networking sites (SNS) and mobile applications (MA) in young patients with kidney disease ...

8. dhhs.ne.gov dhhs.ne.gov/Pages/Renal-Disease.aspx

Chronic Renal Disease - DHHS - Nebraska.gov The Nebraska Chronic Renal Disease (CRD) Program helps eligible Nebraska residents diagnosed with Chronic Kidney Disease (End-Stage Renal Disease)