In a consensus conference held this past summer, the American Society for Transplantation developed recommendations on how to encourage more living kidney donors and provide support to those who agree to donate. Following are excerpts from their consensus statement. The complete paper can be downloaded at www.ast.org.

Introduction

In the rare ‘easy consensus’ of the transplant world, we can agree that live donor kidney transplantation is the best treatment option for most patients with late-stage chronic kidney disease. Consequently, the declining rate of living kidney donation in the United States has been confounding. In spite of this, novel strategies to remove barriers to living donation have neither been effectively disseminated nor widely implemented.

To address these issues, a consensus conference was held June 5-6 to identify best practices and knowledge gaps pertaining to live donor kidney transplantation and living kidney donation. Initiated by the AST Living Donor Community of Practice, and built with the support of the AST Board (as well as other entities), the conference ultimately partnered 11 professional societies and 67 participants representing transplant professionals, patients, and other stakeholders. Individual workgroups, who prepared for months in advance, discussed processes for living kidney donation education; efficiencies in process; disparities in living donation; and financial and systemic barriers.

The clinical, policy, and research recommendations are outlined below.

Clinical recommendations

  • Adopt the philosophical approach that the living donor kidney transplant (LDKT) is the best option, with education integrated throughout disease progression and treatment process
  • Develop a culture supporting the LKD program, including dedicated living donor personnel, a streamlined process, careful evaluation of medically complex donors, and participation in KPD (or referral)
  • Implement an independent, national educational website for patients and the general public. Include a LKD Financial Toolkit.
  • Develop a process to ensure that transplant, nephrology, and primary care attain competency in LDKT educational content and approaches
  • Provide more culturally-tailored LDKT education
  • Systematically review live donor metrics to measure efficiencies and improve quality

Research priorities

  • Examine effectiveness of strategies to optimize informed decision-making
  • Evaluate impact of strategies to strengthen partnerships between community nephrology and transplant
  • Evaluate quality improvement initiatives to optimize the donor evaluation process and experience
  • Examine strategies to reduce financial barriers across centers, to include comprehensive risk and benefit information about LKD, known fears or concerns about LKD, and stories about real-life LDKT and LKD 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 transplant 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 LKD Financial Toolkit, which includes a summary of LKD 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 LKD program
  • Hire dedicated living donor personnel, including a living 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 LKDs 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 LKD metrics (i.e., LDKTs performed, LDKT rate, proportion of living donors by key socio demographic characteristics in which disparities exist, and utilization of the NLDAC program), 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