Background: The Internet is a convenient, immediate, cost-effective, and private way to deliver healthcare information necessary for making informed treatment decisions. Little is known about the information needs and Internet usage of potential and actual kidney transplant candidates. We assessed kidney transplant candidates’ use of the Internet and the Scientific Registry of Transplant Recipients (SRTR) for information about kidney transplantation and organ donation.

Methods: Telephone surveys were conducted with patients initiating transplant evaluation and waitlisted candidates at our transplant center. Surveys consisted of 56 open- and closed-ended and Likert-scale questions. Open-ended responses underwent thematic analysis.

Results: Fifty-four (74%) patients participated. The average age was 54 years; 59% were male; 54% were white, 30% were black, 15% were other; and 96% had at least a high school education. Most respondents owned a computer (82%), had access to the Internet (91%), and used the Internet on average 5 or more hours in the prior week (56%). Levels of self-efficacy in using the Internet were high (35%), medium (43%), and low (22%). Of those who used the Internet, 61% had searched for information about kidney transplantation. Most patients (61%) reported that the Internet was “useful” or “very useful” in helping them make decisions about their health. Respondents specifically sought information about how to get waitlisted, life expectancy, life changes e.g., dietary, quality of life after transplantation, donor eligibility criteria, and recipient recovery time. Many (42%) reported finding “a little” or “some” of the information they sought, but 13% found “all” of it. While only 20% of patients reported being aware of the SRTR, and only three (6%) had used the SRTR website, 72% of all patients stated that they wanted SRTR information either “a lot” or “completely.” Most (83%) reported desiring a list of transplant websites at the start of their evaluation process. Patients most preferred to get information about transplantation by calling the transplant center (57%), the Internet (26%), books (7%), and other ways (9%).

Conclusions: Most participants used the Internet to obtain information about kidney transplantation, suggesting that the Internet is a useful resource for kidney transplant candidates. Patients should be better educated about the availability and usefulness of the SRTR and other transplant websites to foster informed treatment decisions.

« Back to 2013 American Transplant Congress