As the organ shortage continues to grow, transplant centers are using organs from increased risk donors (IRD) more frequently.1,2 These donors have behavioral risk “factors associated with increased risk for disease transmission, including blood borne pathogens HIV, Hepatitis B (HBV), and Hepatitis C (HCV)” based on the US Public Health Service (PHS) guidelines (Organ Procurement and Transplantation Network policies 1.2 and 2.4).3 Approximately 14% of all US kidney donors (~2,580 organs/year) are from increased risk donors, with a rate that is increasing in recent years.1,2,4 Given the additional, albeit extremely low, risk of disease transmission that IRD organs confer to recipients,5,6 OPTN policy mandates that transplant centers obtain specific informed consent from transplant candidates before they accept IRD organs for transplantation. However, the OPTN has not promulgated guidelines or standards for educational content to be disclosed as part of the informed consent process. In effect, the content of information disclosed about IRD organs varies across centers.4-7 Studies show that most kidney transplant candidates (KTCs) as well as non-physician transplant providers lack sufficient knowledge about IRD organs to make informed treatment decisions or accurately inform patients about such organs, respectively.7-10 Two decision aids have been developed to provide liver or kidney transplant candidates with personalized risk information about the proportion of grafts that would be turned down before achieving candidates’ preferred level of risk of graft failure,11 or patients’ estimated survival if they were to accept or decline an IRD organ offer based on their clinical characteristics.12 Neither aid addresses all elements of informed consent for accepting or refusing IRD organs, nor assessed much patient knowledge of IRD kidneys, nor was evaluated via a randomized controlled trial (RCT). To overcome these limitations, we developed an iPad mobile app, called “Inform Me about Increased Risk Donor Kidneys” that delivers information to KTCs about the definition of, risks, benefits, and alternatives to using IRD kidneys. Computer adaptive learning method personalizes information according to each KTC’s comprehension levels in interactive chapters to increase comprehension. Tailored knowledge questions assess KTCs’ knowledge gaps to enhance their informed consent for IRD kidneys. We conducted a multisite RCT to evaluate the efficacy of Inform Me on increasing KTCs’ knowledge about IRD kidneys. Inform Me significantly increased knowledge about IRD kidneys greater than transplant education alone (p&lt;0.001). The objectives of the proposed research are to: (1) update Inform Me for wide-spread dissemination to organ procurement organizations and transplant centers across the United States; and (2) establish a partnership between Dr. Gordon at Northwestern University and Gift of Hope to host Inform Me on a computer server in perpetuity. To accomplish these objectives, we will update Inform Me content to reflect recent clinical advances (e.g., the new cure for Hepatitis C), and update the software to broaden the accessibility of Inform Me by making it available as a website. Literature reviews will be conducted to obtain data to update the app. No primary data will be collected. Through dissemination, Inform Me can help standardize the education that transplant centers deliver to KTCs about IRD kidneys. Accordingly, Inform Me can facilitate a coordinated and consistent message about IRD kidneys across the multidisciplinary transplant team, a
|Effective start/end date||1/1/16 → 12/31/16|
- Gift of Hope Organ & Tissue Donor Network (Agmt 08/04/16)
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