Living-donor follow-up attitudes and practices in U.S. kidney and liver donor pr

[Clark]

https://www.ncbi.nlm.nih.gov/pubmed/23388736

Transplantation. 2013 Mar 27;95(6):883-8. doi: 10.1097/TP.0b013e31828279fd.
Living-donor follow-up attitudes and practices in U.S. kidney and liver donor programs.
Waterman AD, Dew MA, Davis CL, McCabe M, Wainright JL, Forland CL, Bolton L, Cooper M.

Abstract
BACKGROUND:
Although U.S. transplantation programs must submit living-donor follow-up data through 2 years after donation, the submissions have high rates of incomplete or missing data. It is important to understand barriers programs face in collecting follow-up information.
METHODS:
Two hundred thirty-one programs performing living kidney donor (LKD) and/or living liver donor (LLD) transplantation were contacted to complete a survey about program attitudes concerning donor follow-up, follow-up practices, and barriers to success.
RESULTS:
Respondents representing 147 programs (111 with only LKD and 36 with both LKD and LLD) participated. Sixty-eight percent of LKD and 83% of LLD respondents said that achieving follow-up was a high priority. The majority agreed that donors should be followed at least 2 years (61% LKD programs and 73% LLD programs), and sizeable percentages (31% LKD and 37% LLD) endorsed 5 years of follow-up. However, approximately 40% of programs lost contact with more than 75% of their donors by 2 years after donation. Follow-up barriers included donors not wanting to return to the program (87%), out-of-date contact information (73%), and lack of program (54%) or donor (49%) reimbursement for follow-up costs. Whereas 92% of LKD and 96% of LLD programs inform potential donors about follow-up requirements, fewer (67% LKD and 78% LLD) develop plans with donors to achieve follow-up.
CONCLUSIONS:
Most respondents agree that donor follow-up is important, but they report difficulty achieving it. Improvements may occur if programs work with donors to develop plans to achieve follow-up, programmatic standards are set for completeness in follow-up data reporting, and sufficient staff resources are available to ensure ongoing post-donation contact.
PMID: 23388736 [PubMed - indexed for MEDLINE]

[brenda]

Although I posted this elsewhere, I am repeating it because of the implication in this abstract that donors are somehow complicit in the lack of followup.

I have been calling and leaving messages on the Living Donor Coordinator's voice mail at Georgetown University for a month now. In each of my messages I have given my name, contact information, date of donation, and request that she either contact me or simply send the follow up lab slips (not a very expensive follow up request despite the implied cost in this abstract.)  I have reminded her that this is an UNOS/OPTN requirement, that I was required to agree to this in writing prior to donation, and that the hospital's Medicare reimbursement is linked to the 2-year follow up of donors. I have not moved, changed my phone numbers, e-mail, or physical address. I HAVE HEARD NOTHING BACK.  If this is the response for a donor trying to comply with follow up requirements, what happens to those who are just out there thinking that if there is anything that needs to be done the transplant centers will contact them?  Obviously Georgetown does not have any form of regular follow up for donors. 

Am I angry? Yes. Do I feel used and ignored? Yes.  Am I against all living donation? No, but I really think UNOS/OPTN are too weak or uninterested to protect donors.

Brenda

[Clark]

Dear Brenda,

  Have things improved? Or have you found a different set of more responsive health services providers? Regardless, please consider reporting your unsatisfactory experience with this non-compliant transplant center to the OPTN via the UNOS Patient Services hotline at 1-888-894-6361. Best wishes.

[MouniJose]

I have reminded her that this is an unos requirement.