blog version

Stephen Rice, Project Director

About a year ago, WaitList Zero put out a call to the Living Kidney Donor Community to complete a short online survey. Our goal was to better understand the experience of Living Kidney Donors (LKDs). The response was big – 181 donors filled out the questionnaire. One of the questions we asked was the following:

Are there any elements of the living donor experience that you wish could be improved? Please share any suggestions that you may have for how government agencies, transplant centers, and/or medical professionals could improve the living donor experience.

After reading through all of the comments, I came up with a set of 10 themes. Since some respondents provided thoughts about more than one area, I ended up with 249 coded responses. Here are the results.

Theme# of responses fitting themePercentage of donors
Good/great overall experience64 (17 also offered suggestions)35%
Need for financial neutrality and/or employment protections5631%
Better donor/patient education and support2715%
Better/faster hospital follow through2413%
Better post-donation follow-up2313%
Better public awareness efforts127%
Paid insurance / insurance protections106%
No response106%
249 coded responses100%

One-third of donors made a special note that their overall hospital experience was good or great, but that doesn’t mean the other two-thirds had poor experiences. It just means that the majority of comments were just offering areas of improvement. One big take-away, however, is the significant variation in quality across different transplant centers. Most respondents didn’t mention theirs by name, but of those that did, we know that at least centers in 13 states were represented. The categories of feedback provide a guide for hospitals interested in uncovering the “secret sauce” that makes for a great donor experience – better and faster follow through and better patient/donor education and support.

Let’s look more closely at these two areas where some hospitals could improve – better and faster follow through and better patient/donor education and support. We asked open-ended questions, so nearly one in six donors bringing these themes up on their own feels significant.

We weren’t surprised to see that many donors wished for better transplant education and support. This need is pointed out in current research literature including recommendations from within the field. Feedback from some donors seemed pretty serious – such as expressing general confusion, a lack of even basic information and written materials, or wishing hospital staff had talked “to” them, not “at” them or “over their heads.” Others had more specific input such as educational videos in waiting rooms, better discharge procedures, and peer mentoring opportunities.

In terms of better or faster follow through, some donors found that their coordinator was too darn busy (or didn’t appear to care enough) to return calls, communicate updates, and move things along. (To be fair, some donors called out caring coordinators with good follow through). Many expressed the evaluation process as being too drawn out or inefficiently planned— leaving them in limbo. As one respondent asked, “how many potential donors are lost because they couldn’t get a phone call returned”?

Improved follow-up post-donation was another big area of improvement. UNOS, the organization that oversees the field of transplant on behalf of the federal government, sets follow-up standards. Currently hospitals are required to conduct donor follow-up visits at 6 months, 12 months, 1 year, and 2 years post-donation. Is this enough? Clearly many donors don’t think so. Some respondents translated poor follow-up into feelings of being unimportant, vulnerable, “used by the medical community,” feeling like a “second-class citizen,” or “abandoned once the surgery was done.” This is a theme that merits further research and focus.

Financial neutrality including employment protections topped the list of improvements in the donor experience. Secure insurance coverage to pay for things like complications or follow-up visit copays also falls squarely into the financial realm as well. The bottom line is that many donors make financial sacrifices when they decide to save a life. Respondents used words like financial struggle, burden, obstacle, and strain when describing the financial element of donation. Proposed solutions included paid leave, travel and lost wage reimbursement, and short-term disability. Not one person wished that they should have received payment for their donated kidney. Not one! Many, however lamented the thought of others not being able to save a loved one because they couldn’t afford to.

WaitList Zero has already begun working on these issues, which will intensify in the new year. You can read here about “transplant support” legislation that we are working on in New York state, here to learn about our plans to pilot a public awareness campaign, and here to read about our perspective on donor and patient education. We’ve also assembled the Coalition for Living Kidney Donation – 16 transplant- and living donor-focused organizations who, in addition to supporting efforts to pass the above legislation, is pushing for the federal government to sponsor a “Living Donation Breakthrough Collaborative” to disseminate transplant best practices and ensure that ALL living donors receive the best education, service, support, and care that they deserve.

Donors should never be worse off for having donated and should be treated with the respect and care that they deserve. If you’d like to follow our progress, subscribe to our newsletter and receive updates from WaitList Zero as we undertake this important work.