New ways to improve living kidney donation

Live Donor Community of Practice (LDCOP) recommendations

The Live Donor Community of Practice, formed in 2012, is a group of clinicians with expertise in living donation. Its mission is to advocate, support, and advance knowledge to improve the education and care of the live organ donor. In the summer of 2014, the American Society of Transplantation and the LDCOP convened a consensus conference to identify best practices and knowledge gaps pertaining to live donor kidney transplantation and living kidney donation. The consensus conference participants made recommendations for education of clinicians, donors and recipients, improvements in clinical practice, standards for transplant programs, public policy recommendations, and research priorities to improve living organ donation.

Develop a philosophical approach that living kidney donor transplantation (LDKT) is the best option for most transplant candidates and reflect this philosophy in educational processes

LDKT education of patients with advanced stages of CKD should occur repeatedly throughout disease progression and transplantation processes (e.g., at evaluation, at waiting listing, at re-evaluation)

Standardize LDKT content and processes across centers to include comprehensive risk and benefit information about living kidney donation (LKD), known fears or concerns about living kidney donation, and stories about real-life LDKT and living kidney donation experiences

Provide patients and their caregivers with training about how to identify and approach potential living donors

Provide more culturally-tailored LDKT education to racial/ethnic minority patients, with historically lower LDKT rates, and their support systems

Educate community nephrologists and primary care physicians about LDKT so patients have access to trans plant education earlier in the disease process

Develop a process to ensure that transplant and dialysis team members attain competency in living donation risks, methods for communicating risks and benefits, and ways to provide guidance to transplant candidates on effective and ethical approaches to engaging potential donors

Improve and expand the use of technology to better educate patients

Implement an independent, national clearinghouse(e.g., website) for the general public and potential donors

Increase awareness of the National Living Donor Assistance Center among providers, patients, and potential living donors

Create a living kidney donation Financial Toolkit, which includes a sum mary of living kidney donation financial risks, estimation of costs, available financial resources for the donor, state tax laws pertaining to donation, and how the Medicare Cost Report can best be optimized by programs.

Transplant program recommendations

Develop a culture among members of the transplant center staff supporting the living kidney donation program

Hire dedicated living donor personnel, including a liv ing donor coordinator and dedicated physician champion or director

Ensure that systems and personnel are in place to

Respond immediately and thoroughly to living donor inquiries

Carefully evaluate medically complex donors and inform donor candidates who are turned down because of these issues that they may have access to donation at programs with different eligibility

Create an expedited process for transplant candidates with potential living kidney donors who are at lower risk/lower morbidity or who may be able to receive a transplant pre-emptively

Participate in an active KPD program, or refer potential incompatible pairs to programs that do

Collect and systematically review live donor metrics to measure efficiencies

Create a quality improvement program to ensure ongoing evaluation and improvement of transplant candidate and living donor education about LDKT

Public policy recommendations

Actively pursue strategies and policies that achieve the goal of financial neutrality for living donors, within the framework of federal law

Improve and clarify CMS auditing of current transplant education practices within dialysis centers

Expand OPTN policy pertaining to required educational elements for potential living donors, to include the higher risk of ESRD and pregnancy complications in kidney donors and additional psychosocial risks/benefits associated with donation and non-donation, as the evidence base evolves

Modify the National Living Donor Assistance Center to eliminate financial means testing and to include some reimbursement for living donor lost wages

Inform transplant programs of program-specific living kidney donation metrics (i.e., LDKTs performed, LDKT rate, proportion of living donors by key sociodemographic characteristics in which disparities exist, and utilization of the NLDAC pro gram), in comparison to regional and national data

Develop and pass legislation that prohibits denial of coverage or increase in premiums of life or disability insurance for living donors

Develop and pass legislation that ensures living donor surgery is considered a qualifying health condition under the Family Medical Leave Act

Develop and disseminate uniform guidance to payers on coverage for living donor expenses

Modify state tax laws to include a credit (vs. deduction)for living donation

Create a living donor VISA program for non-residents

Recommendations for research

Examine the effectiveness of different strategies to optimize informed decision-making about LDKT and liv ing donation

Evaluate the impact of strategies to strengthen partner ships between community nephrologists, dialysis providers, and transplant programs on LDKT education, access, dis parities, and rates

Evaluate quality improvement initiatives to optimize the donor evaluation process and experience, reduce delays, and increase participation in kidney-paired donation

Examine strategies to reduce financial barriers to living donation, with particular attention to the impact on current disparities in LDKT.