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Author Topic: When Good Intentions Are Not Enough: Obtaining Follow-up Data in Living Kidney D  (Read 5082 times)

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Offline Clark

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http://onlinelibrary.wiley.com/doi/10.1111/j.1600-6143.2011.03815.x/abstract

Personal Viewpoint
When Good Intentions Are Not Enough: Obtaining Follow-up Data in Living Kidney Donors
E. S. Ommen, D. LaPointe Rudow, R. K. Medapalli, B. Schröppel, B. Murphy
DOI: 10.1111/j.1600-6143.2011.03815.x
American Journal of Transplantation
Early View (Online Version of Record published before inclusion in an issue)

Abstract

The Organ Procurement Transplant Network/United Network for Organ Sharing (OPTN/UNOS) has increased the amount of data collected before and after donation and increased the duration of donor follow-up to 2 years, yet there is evidence that reporting is incomplete. We examined the frequency of missing data in the OPTN/UNOS donor follow-up registry and found that reporting rates were low, particularly for donors who may have limited access to health care. We argue that a national donor follow-up registry is essential to ensure transparency in ascertaining long-term health outcomes among all living donors and in providing assessments of quality assurance within transplant programs. We have suggested approaches to strengthen the donor follow-up registry system. These include setting clear and high standards for follow-up reporting, a system of incentives and penalties that would motivate transplant centers to comply with these standards and would encourage donors to follow-up and lifelong follow-up reporting by primary care providers. We argue that the US government must provide funding to support a donor follow-up registry that can allow for meaningful and valid conclusions, in recognition of donors’ public service and to maintain trust in the system of living organ donation.
Unrelated directed kidney donor in 2003, recipient and I both well.
626 time blood and platelet donor since 1976 and still giving!
Elected to the OPTN/UNOS Boards of Directors & Executive, Kidney Transplantation, and Ad Hoc Public Solicitation of Organ Donors Committees, 2005-2011
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Offline stevewin@windstream.net

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Clark ,You just wrote what needs to be done.could this national registry include other living donors and be life long to help future generations of living donors?

Offline Clark

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My position is that data collection starts with Ron Herrick in 1954, and that we're all, "Missing, lost to follow up" since.  We seem to be inching closer to a registry, and maybe we'll have one before we're left out in the cold by advances in xenotransplantation, stem cell therapy, mechanical prostheses, or some other technology.  Once we have one, it shouldn't just be for new donors going forward, but for all of us, donors and donor candidates, from Ron Herrick on.
Unrelated directed kidney donor in 2003, recipient and I both well.
626 time blood and platelet donor since 1976 and still giving!
Elected to the OPTN/UNOS Boards of Directors & Executive, Kidney Transplantation, and Ad Hoc Public Solicitation of Organ Donors Committees, 2005-2011
Proud grandpa!

Offline Donna Luebke

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If a living donor registry is funded, it must be outside the OPTN and transplant centers.  Donors need to self-report or have their Primary Care Providers report.  The Living Organ Donor Network data shows that data reporting is more thorough when the donors self-reported to LODN and not to the transplant programs.  European data shows that more thorough and accurate when PCPs involved.  If the OPTN does not want to get it right--and get it done--then is time for some new entity.  We have plenty of evidence to show that programs are noncompliant.  Allowing the transplant community to collect and control the data analysis and reporting has too many inherent conflicts to be trusted.  Has to be an independent entity whose interest is solely the physical, mental, psychological, financial, and spiritual health and well-being of donors. 

The excuse that donors do not want to followup is wrong.  The Boston Nurses Study is proof that folks will followup and for their lifetime.  Well over 100,000 nurses have been followed for years and  will be the rest of our lives.  When patients are admitted to the hospital, we get next-of-kin emergency contact info. No program should be allowed to mark any donor lost to followup until they have 1) a returned certified letter after efforts to call the donor and the donors PCP have failed and  2) documentation that could not find the donor's next-of-kin.  For the Boston Nurses study we update our data as needed including "WHO" is that person they could contact in case cannot find us.  My gut tells me that programs do not do donor followup because data means accountability.  Is time the feds put some teeth in the (mandatory) data submission policy on behalf of donors AND enforce sanctions against those who do not comply. 
Donna
Kidney donor, 1994    Independent donor advocate
MSN,  Adult Nurse Practitioner
2003-2006:  OPTN/UNOS Board of Directors, Ad Hoc Living Donor Committee, Ad Hoc Public Solicitation of Organs Committee, OPTN Working Group 2 on Living Donation
2006-2012:  Lifebanc Board of Directors

 

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