Tuesday Sep 20, 9 pm Eastern
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Am J Transplant. 2016 Jul 12. doi: 10.1111/ajt.13961. [Epub ahead of print]
A Smartphone App for Increasing Live Organ Donation.
Paper freely available at Journal Website (till Oct 15)
There is also a follow up commentary on the ethics of an app here (gated).
Every morning on my way to work I stop by a Starbucks to get coffee and several months ago I saw on a board a piece of paper about someone in need of a kidney transplant. A few weeks ago, as I was driving I saw a piece of paper attached to a window on a vehicle that said “Wife and Mother Diane _____ needs a kidney. Please help. Get tested. Contact: __@___ and Facebook: My mother Diane _____ needs a kidney. Thank you. God bless”
In our connected age it is time for the tools for asking for help advance past the Scotch tape and a photo copier. The authors of this article, developed an app in collaboration with Facebook that enables waitlisted candidates to write their personal story and struggles of end-stage renal or liver disease and their need for a living donor. This app essentially creates a narrative with text, pictures and videos. Some patients are embarrassed to ask their relatives, friends, or even use social media.
We obviously need more donors, as there has been a decline in the last few years for several reasons, including economic disincentives as well as publication of recent studies on long-term outcomes of living kidney donation (NEJM, JAMA, KI, check out our #NephJC).
Methods and Results.
This was a single center (Johns Hopkins), prospective cohort study that included kidney (N=40) and liver (N=14) transplant candidates that were active on the waitlist and who had no potential living donors at the time of enrollment. Participants were matched for age, sex, race, blood type, panel reactive antibodies (PRA), Model for End-Stage Liver Disease (MELD) and organ needed. Participants did not have to be tech savvy, as they were trained how to use the app (for Apple and Android devices).
Outcome was assessed by a survey that looked at the numbers of “likes”, “comments” and “shares” per each post. Participants also rated the app. Then, by using statistical analysis and different models they estimated the time to first donor referral with censoring for deceased and living donor transplant, death and administrative censoring.
In this cohort, the median time on the waitlist was 1.4 years at the time of enrollment. The participants gave good reviews in general about the app and they made some suggestions that needed improvement such as an autosave feature, web-based access, and adding a “tag option” to tag their friends and family on Facebook (and hence, reach more people). A feature to allowing updates to the narrative (e.g., a blog) could have also been helpful. At the end of the study, that lasted almost one year, there was an increase in living donor referrals after the app implementation (18 potential living donors, 11 for kidney and 7 for liver donation). 13 out of 54 participants, had at least one referral to the transplant center. The authors concluded that “compared with matched controls, participants were 6.61 times more likely to have a donor come forward on their behalf”
While the sample size lacked power, the study supports the importance of Social Media. There are many barriers for transplant candidates and one of them is approaching family and friends. Some of the authors are involved in the Living Donor Champion program, another tool to help transplant candidates looking for a living donor. Many potential donors out there not aware that they are needed. We need to find ways to utilize these untapped resources and get more patients transplanted. This study opens the door to rigorous studies on how to include social media to target this problem.
Summary by Hector Madariaga, Nephrologist, Greater Boston Area