End Stage Liver Disease, End Stage Renal Disease
Conditions
Keywords
Live Donor Transplant, Social Media, Advocacy, Education, Living Donation, The Donor App
Brief summary
This study utilizes a web-based application to help patients on the organ transplant waitlist communicate patient's need for a living donor via social media and provide interested potential donors the opportunity to engage with the evaluation process.
Detailed description
Barriers to identifying a live donor include lack of education and hesitance to initiate a conversation about live donation. For these reasons, many transplant candidates are hesitant to discuss candidate's illness and are therefore reluctant to pursue live donor transplantation. The investigators hypothesize that utilization of social media to spread awareness about candidate's illness and candidate's need for a live donor will enable many transplant candidates to successfully identify live donors. In this study, participants will use a novel web-based application, called the Donor App, to create and share candidate's story via Facebook and other social networks to assist in the search for a live donor.
Interventions
OTHERThe Donor App
The Donor app is a web-based application that helps transplant candidates tell the candidate's story via social media in the hopes of identifying an appropriate living donor. Sample stories created using the Donor App can be found at www.thedonorapp.com.
Sponsors
MaineHealth
Washington University School of Medicine
Scripps Health
Yale University
Rush University Medical Center
Johns Hopkins University
Study design
Allocation
NA
Intervention model
SINGLE_GROUP
Primary purpose
OTHER
Masking
NONE
Intervention model description
All participants will be invited to use the Donor App.
Eligibility
Sex/Gender
ALL
Age
18 Years to No maximum
Healthy volunteers
Yes
Inclusion criteria
* At least 18 years of age * On the kidney-only or liver-only transplant waiting list at a collaborating center
Exclusion criteria
* Younger than 18 years of age * Not on the kidney or liver transplant waiting list * On multiple organ transplant waiting lists
Design outcomes
Primary
| Measure | Time frame | Description |
|---|---|---|
| Potential donors identified | Up to 5 years | Number of potential live donors that come forward to the transplant center on behalf of the participant. |
| Live donor transplantation | Up to 5 years | Number of participants that receive a live donor transplant. |
Secondary
| Measure | Time frame | Description |
|---|---|---|
| App utilization as assessed by number of participants with story completion and posting in the donor app | Up to 5 years | The extent of a participants story completion and posting will be recorded internally by the Donor App. The number of participants that complete stories and post will be counted to assess app utilization. |
| The Donor App Implementation | Up to 5 years | Success of the Donor App across multiple institutions will be tracked by the number of participants enrolled and invited to use the app at each institution. |
Countries
United States
Contacts
Primary ContactAndrew Cameron, MD PhD
Outcome results
None listed