OPTN Procedures to Collect Follow-up Data from Living Donors

[Clark]

http://optn.transplant.hrsa.gov/ContentDocuments/Guidance_Post_Donation_Donor_Follow-Up.pdf

Guidance for Developing and Implementing Procedures to Collect Post-Donation
Follow-up Data from Living Donors
Developed by the OPTN/UNOS Living Donor Committee

Purpose
The Living Donor Committee developed this resource to help transplant programs maintain contact with living donors and
collect follow-up data from them.

Introduction
In November 2009, the OPTN Board of Directors charged the Living Donor (LD) Committee with developing and
disseminating a resource outlining best practices for collecting and submitting living donor follow-up data, based on a
review of high-performing programs.  To this end, the LD Committee developed a non-exhaustive set of
recommendations to assist transplant programs to improve their protocols for maintaining contact with donors and for the
collection and submission of complete and accurate Living Donor Follow-up (LDF) data.  These recommendations derive
directly and exclusively from actual practices employed by high-performing programs, as described further below.
Follow-up of living kidney and liver donors is crucial for understanding and minimizing the risks faced by donors.  The
OPTN currently requires transplant programs to report follow-up data on living donors at discharge (or 6 weeks postdonation, whichever is earlier), 6 months, 1 year, and 2 years after donation.  Compliance with current OPTN data
submission policies is high (i.e., transplant programs submit the required LDF forms).  However, the LDF forms that are
submitted often contain missing or incomplete data.  Living donors may be lost to follow-up or transplant centers may
have obtained only partial data on donors at the time of LDF form submission.
This resource does not specify official policy for clinical practice with respect to the follow-up medical care of living
donors and it does not prescribe or define a standard of care.  It does not carry any monitoring or enforcement
implications associated with any OPTN/UNOS policy.  It will not be used to determine member compliance with any
policy or bylaw.  Rather, this resource is intended for transplant centers’ voluntary use.  It is intended to help programs to
review, discuss, and generate ideas on how best to develop or improve their own strategies to promote optimal follow-up
of living donors.  Transplant programs should consider the recommendations below as suggestions, and consider the
extent to which each suggestion may or may not be applicable or feasible given their own institutional setting and
operational constraints.
Both new and existing living donor transplant centers can use this resource as a “toolbox” when developing or modifying
their living donor follow-up protocols.  The toolbox may be useful for LDF data collection specifically as well as for
general issues of maintaining contact with donors after donation.

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Acknowledgements
The following Living Donor Programs assisted the LD Committee with the development of this document.  The Program
members named provided the greatest amount of information; Program directors and additional Program administrators
also contributed to this document.
Living donor liver programs
Lahey Clinic Medical Center, Burlington, MA (Denise Morin, RN, MSN)
University of Virginia Health Sciences Center, Charlottesville, VA (Anita Sites, RN, BSN, CCTC)
Living donor kidney programs
The Christ Hospital, Cincinnati, OH (Barbara Groene, RN, BSN)
Mayo Clinic, Jacksonville, FL (Sharon White, RN, BSN, CCTC)
North Austin Medical Center, Austin, TX (James Pittman, RN, BSN)
Ohio State University Medical Center, Columbus, OH (Laura Murdock, MHA, Robin Petersen-Webster, LPN, CCTC)
Presbyterian-St. Luke’s Medical Center, Denver, CO (Kelli Jantz, RN, BSN, Marita Dougherty, MSW)
University of North Carolina Hospitals, Chapel Hill, NC (Lauren Kearns, MSN, RN-BC, Ann Litts, RN, BSN, CCTC,
Deborah Erickson, RN, BSN, MS, PhD)