http://transplantpro.org/high-performing-living-donor-programs-have-much-in-common/High-performing living-donor programs have much in common
“We’ve created a resource that we hope will help transplant programs do a better job of following up with living donors,” said OPTN/UNOS living donor committee member Mary Amanda Dew, Ph.D. “Although we didn’t develop the resource specifically to help programs improve their policy compliance rate,” Dr. Dew explained, “it’s certainly a beneficial by-product. The guidance document—and the need for data to begin with—stems from our fundamental belief in preserving the safety of all living donors. “It’s simply the right thing to do,” she said.
Dr. Dew, professor of psychiatry, psychology, epidemiology and biostatistics at the University of Pittsburgh School of Medicine and Medical Center, is referring to “Guidance for Developing and Implementing Procedures to Collect Post-Donation Follow-up Data from Living Donors.”
Setting good examples
Developed by the living donor committee and first published on the OPTN website in 2011, the little-known guidance document was the result of interviews with several living donor programs, chosen because of their excellent track record in providing the OPTN with living donor follow-up data. (The original guidance document is available at
http://optn.transplant.hrsa.gov (resources > professional resources > march 28, 2011).
In an effort led by Dr. Dew, the committee is in the process of updating the guidance document and promoting its availability—an idea welcomed by programs anxious to comply with new living donation policy 12.8.3.
The OPTN has been collecting data on living kidney donor follow-up since 1999, but the data collected wasn’t always useful, and many of the follow-up forms were incomplete. The programs could indicate that they had lost touch with the donor, which excused them from their obligation of sending any subsequent follow-up data. The new policy, passed by the board in November and implemented in February, should help change all that. The policy defines specific thresholds for living kidney donor follow-up forms. (Note: Policies regarding living liver donor follow-up are still in development.)
Expanding the interview pool
“When creating the original guidance document,” Dr. Dew said, “we interviewed UNOS auditors and eight living donor programs, and all of the programs were high-performing in terms of follow-up data submission,” she added.
During the second round of interviews to update the guidance document, she and her fellow committee members interviewed UNOS auditors—who by that time had even more experience auditing living donor programs. They also interviewed 14 living kidney donor programs with a range of follow-up compliance rates two years postdonation—higher rates (80 percent or higher) to lower (25 percent or lower). “One of the concerns with the original guidance document,” Dr. Dew explained, “was that we had talked to high-performing centers only. By interviewing programs with a range of success at following their living kidney donors,” she added, “we could make sure that the practices we heard from the higher-performing programs were unique to their high performance.”
Creating a Culture of donor Safety
The initial guidance document defined three best practices that led to effective follow-up. As a result of the expanded number and range of programs interviewed, the updated version under way defines four successful best practices.
A living donor program’s follow-up must have the following best practices in place to be successful:
the overriding philosophy that follow-up is essential to the safety and well-being of the donor
a practice of building and maintaining a relationship with each donor
a systematic approach with a protocol as well as quality-assurance measures to make sure the protocol is functioning well and
tactics for minimizing any follow-up burden to donors.
Successful Strategies
“We found that all of the high-performing programs employed strategies from all four best practices, and they used more strategies in each best-practice area than lower-performing centers did,” Dr. Dew said. The interviews also revealed that some of the lower-performing centers had only two of the four best practices, which most often were having in a place a systematic approach and some strategies to minimize burden to donors. “Your center might have a systematic approach for follow-up—it might not be very effective but you could have it in place. And you might even do some of the things that higher-performing centers do, like covering lab costs for the donor or accepting lab work from the donor’s primary-care physician. “Those things may be necessary,” Dr. Dew continued, “but they aren’t sufficient. You must also believe philosophically that follow-up data contributes to donor safety, and you must have and maintain a good relationship with your donors. ”The high-performing centers had all four best practices in place,” she emphasized.