OPTN Living Donor Follow up: Final Day for Public Comment
Some of you may be aware that there are some major steps on the horizon to make sure that the health of living donors is monitored post-transplant more carefully. As reported recently on the Huffington Post, the Organ Procurement and Transplant Network(OPTN) has formulated some new policy proposals. This is a step in the right direction toward making sure that living donors are better tracked. Considering all the testing a donor undergoes prior to transplant, it’s good to see that there is some policy progression to getting better information on how living donors fare after the procedure.
For donor recruitment, this might be a key development, because if you begin to emphasize the imperatives for post-transplant follow up to a potential donor from the start, perhaps they will take a more active role in their own follow up, or at least be prepared to provide follow up information to transplant centers. This may also lead to having more solid information available to donors about the outcomes and post-transplant issues they should be aware of, and it could generate data that may also empower outreach and education efforts. While these are not official benefits presented, the possibilities for improved communication with donors at every stage seem positive.
The current lack of information was a compelling reason to move these policy proposals forward. As the Huffington Post’s summary states
Transplant centers are supposed to do minimal monitoring but a UNOS analysis found they lose track of too many donors. Just a year after donation, they only knew if two-thirds were still alive or dead, and far fewer had had their remaining kidney tested.
And the changing populations of donors necessitate the follow up more than ever:
Donors are getting older. Some transplant centers are accepting donors who would have been turned away not too long ago because they’re overweight or have high blood pressure. More African-Americans, who are more prone to kidney disease, are becoming living donors and there’s less information about their outcomes. Even if people were the picture of health when they donated, later-in-life obesity, high blood pressure and diabetes can raise the risk of kidney disease.
There are certainly arguments that limited resources make extensive monitoring difficult, and concerns about donor compliance with follow up standards. However, this may present a slippery slope in terms of the resources devoted to donor follow up. If such arguments are employed then hard-to-track populations are going to be at an increasingly greater loss, especially when there is already limited data. Specific populations may be elided by certain methods of research if not executed with an eye to such specificity.
Moreover, there is recent evidence that Black children are less likely to get pre-dialysis transplants, more likely to die waiting than Whites, for example. Such inequalities, probably linked to less access to health care, are also what may account for the limited information on the same populations with respect to donor follow up, e.g. a donor’s ability and access to post-transplant support and monitoring. Hence, the outcomes and the after effects of donation over a long term period will be harder to detect. Furthermore, it will become difficult to propose measures, which might actually promote safer and healthier donor care and support both pre- and post-operatively in these populations. In fact, having evidence that donor follow up and post-transplant outcomes for donors are done well may be further incentive–or at least remove disincentives for potential donors.
As one of the policy proposals which outlines stricter Living Donor Follow up form requirements for transplant centers, and a 90% reporting threshold, quotes from a committee report:
Mandatory follow-up at 6 months, 1 year and 2 years following surgery is the transplant community’s responsibility to maintaining the public’s trust and demonstrating a sincere interest in that contract we share with current and future living donors. With statements of its need at the initial encounter with a potential donor and a concentrated effort at bringing the parties together at these 3 time points, the donor is more likely to appreciate the significance of ongoing contact with the health care system beyond year 2 and continue regular, yearly, preventive health care visits and to become their own health care advocate. Regular contact with the centers also allows the donor programs to become familiar with issues that develop after donation providing an opportunity to proactively modify education or procedures to manage these situations.
At this point the policies, if adopted, will primarily apply to kidney donation. They do not yet apply to other forms of living donation. However, for those of you who do work around other living donation should also take a look at these policies.
December 23rd 2011 (today) is the very last day you can weigh in on the proposals and make public comment. Older proposals, when the comment period has lapsed are also archived on the page.
They are available from the Organ Procurement and Transplant Network(OPTN) here (items 8,9,10). This is also a great page to check for some other policy measures on the table, and participate in the discussion of those issues. To further democratize the discussion, pass the word onto your potential donors or other outreach contacts.
You can also subscribe to the mailing list to get updates on when new OPTN proposals are open for comment.
For more information on the current OPTN guidance for living donor follow up visit here.