Study Purpose

To collect data on what living organ donors themselves say they want and need to make living organ donation safer and easier.

Method

For 12 months, online communications from living organ donor and potential donor support groups and support organizations were collected to gain insight into what living organ donors and potential living organ donors say they need and want for themselves.

Summary of Results

Donor needs and wants ranged from financial assistance to cover donation related costs to donors who said they had no needs at all. The study revealed several wants generally not discussed in the literature on living organ donation, for example, donors want their pre-operative psychological evaluations done independent of the transplant center; they also want access to psychological support post-op [mdash] again provided by someone other than the transplant center. Notably, not a single donor or potential donor communication evaluated indicated that donors wanted payment or incentives to donate. Donors wanted better informed consent and, for those who traveled to donate, they wanted access to follow-up care closer to home.

Donors and potential donors also mentioned a need for clearer communication regarding what financial support donors are legally allowed to ask from their recipients or others. Several potential donors reported that their transplant centers' living organ donor coordination team had told them they were not allowed to ask for financial assistance [mdash]none at all. This is, not only, a clear misunderstanding of the original 1984 National Organ Transplant Act language, but also shows a glaring ignorance on the part of at least some transplant professionals of the federal, state, and private assistance programs that exist to support living organ donors.

Conclusion

Who better way to understand living organ donors' needs than to ask them. And, what better environment to ask in than environments where donors feel comfortable sharing without having to worry about how recipients or transplant professionals may view their concerns. This study shows how vitally important it is to improve communication in both directions — donors to transplant community and the other way around. More studies like this one would provide valuable guidance to inform the living organ donor compensation debate and to improve living organ donor care.

CITATION INFORMATION: Fry-Revere S, Middelman M. What Living Organ Donors See as Their Unmet Needs in the United States. Am J Transplant. 2016;16 (suppl 3).

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