Part of my submitted comment [much shorter than Medical Evaluation]
SUMMARY: I strongly support adopting / approving the Proposal. However, I propose a possible alternative and an addition for future consideration.
A. SUGGESTIONS SPECIFIC FOR THIS PROPOSAL.First, the problem this Proposal addresses is not solely under the control of the transplant centers. To achieve follow-up requires the participation and action of two parties: the transplant center; and all living donors, or (if deceased or incapacitated) their families/contact people. In such situations of standards written for only one party, the proposal can take one of two approaches, or both:
1] set a reasonable, expected, "no show / no cooperation / no response" rate by the other party (i.e., by the party to which the standard is not addressed) -- in this proposal, it is acceptable that up to 10% of donors will not cooperate); or
2] establish actions that the party addressed by the standards must perform to meet the standard (e.g., minimum number of letters, of calls, etc.).
The proposal adopted the first approach, probably in part because there are not yet good data about the different possible levels of effort -- how much increase in response from the donors does each increased level of effort accomplish, and for what cost of personnel time.
The information referred to in Figure 1 of the proposal may help in that regard, but may not be sufficient at present to switch to the second approach, above. I recommend that the LDC and UNOS obtain enough information about elements of effort and their additional outcomes and additional costs, to consider switching to the second approach in the future. With that switch, the Policy can require 100% compliance with the standard of reasonable, effective, effort.
Second, the data to be asked for in the future should include Quality of Life (QOL) indicators, related to psycho-emotional-socio-economic questions. Often QOL indicators are more important to Living Kidney Donors than is GFR. The scientific field of QOL Indicators is now quite advanced, and can be relied on in this setting.
I propose this addition for
future consideration. I do not want my additional suggestion to postpone implementation of this Proposal.
B. GENERAL SUGGESTION.The current process of proposed standards and policies being developed by the Joint Society Policy Steering Group is excellent. One concern, however, is that for standards and policies related to Living Donors, a group representing living donors themselves are not in either that Steering Group or in the later process of development and issuing the standards and policies.
I recognize that the Living Donor Committee (LDC) has living donors and is involved in the process thereafter; I am a living donor member of the LDC. I also recognize that individual living donors can comment on the proposed standards and policies during the public comment period. And, I recognize there is not yet a group composed of living donors in which those living donors themselves choose their representatives to be involved in this process.
If living donors form such a group, I strongly recommend that UNOS then formally incorporate that group into the process of development, as the "stakeholder" with the special expertise of having been a living donor. The representatives of that group would supplement quite well the expertises of living donor members of the LDC -- just as the Joint Society Policy Steering Group supplements the expertises of the ATS, ACTS, NATO, OPEN/UNOS, and HRSA members of the LDC.