The Alliance

Action

What do transplant centers need to do?

Identify cohort of patients

1. Finding the right data:

2. Creating/ Utilizing reports:

   1. Utilize the OPTN custom reporting tool in the data services portal “Current waitlisted African American Candidates” provides a list of current kidney candidates reported with AA/Black as race with wait time qualifying information.

   2. Create and use reports built in EMR system.

   3. A combination of both and a master spreadsheet to track where patients are in the process.

3. Identifying patient labs outside transplant center:

   1. Accessing outside labs through care everywhere if you have EPIC.

   2. Using record retrieval technology (e.g. E-health)

   3. Collaborating with dialysis centers and referring practices:

      1. Providing education on what exactly is needed for the patient vs. having all lab results sent to the transplant center to comb through.

      2. Utilizing referral packets as a first step in identification of previous lab results

   4. Patient Advocacy – Engage with patients to find past lab results that might be eligible for wait time modification.

Send Notification Letters:

1. Create a notification letter or use a variation of the OPTN letter. We have included some samples of letters developed in the resource section.

2. Letter tips:

   1. No OPTN language on timeframe between notification #1 and #2

   2. Dialysis center notification not required but may need to collaborate for records.

   3. Notification #2: Sent after reviewing waitlist.  Consider creating 2 notification templates- ELIGIBLE and NON-ELIGIBLE. All patients who do not identify as Black or African American (AA) are non-eligible by default

3. WARNING – We have heard that patients have experienced confusion around some of the individualized letters especially those that are listed at multiple transplant centers. To help combat this:

   1. Think about creating a FAQ to include with your letter.

   2. Consider having patient education review your letter for readability.  Identify and include in the letter who patients can contact if they have questions.

   3. Due to the complexities around this policy, centers have identified specific people to answer patient questions or provided education/ resources to access centers.

4. Continued Implementation- Adherence to this OPTN policy is still required for patients who are being listed between 1/5/2023-1/3/2024. After 1/3/2024, patients will still need to be educated on this policy. How will your center continue to provide this information over the year?

   1. Update listing process to include the additional letter at listing.

   2. Consider building this policy information into your evaluation education.

Submit Modifications: Challenges and Lessons Learned

1. Many centers are utilizing a signed PDF for multiple candidates. Some centers have been asked to submit a digital/ electronic signature.

2. To comment or not to comment? It appears centers have been doing both practices on the modification form, it doesn’t appear to impact the submission process one way or the other.

3. You can always resubmit modification forms for consideration if you feel that the patient is qualified for the modification time.

Other Considerations:

1. Some patients are getting A LOT of time back, bouncing them to the top of the list to start receiving offers. This has had a significant operational impact on many transplant centers, especially in ensuring that a patient has been reevaluated recently.

2. Some centers are tracking all their patients and the time they should be getting back so they can identify patients who may be receiving significant time back. At some centers the coordinators and physicians review this list frequently to determine if inactivation or expediating of reevaluation is needed.

Education

Background

In January 2022, the OPTN Minority Affairs and Kidney Transplantation Committees proposed Establish OPTN Requirement for Race- Neutral eGFR Calculations to require eGFR calculations used for the purposes of the OPTN be race-neutral. Race-inclusive calculations can overestimate Black candidates’ eGFR values and result in a delayed start of waiting time accrual to receive a kidney transplant. In August of 2022 the OPTN Minority Affairs and Kidney Transplantation Committees proposed Modify Waiting Time for Candidates Affected by Race-Inclusive eGFR Calculations to provide a pathway for registered candidates who have been impacted by a race-inclusive eGFR calculation to regain waiting time they could have received if a race-neutral calculation was used to estimate their GFRs.

Timeline

This policy took effect January 5, 2023. Transplant programs must comply with this policy by January 3, 2024.

• Black/African American candidates registered from January 5, 2023, until Jan 3, 2024, are required to be assessed for eligibility for a potential waiting time modification.
• Black/African American candidates registered after January 3, 2024, remain eligible.

Specifics of Qualifying Candidates

Qualifying candidates must meet all the following criteria to be eligible for a waiting time modification:

• Currently registered as Black or African American in the OPTN Computer System
• Previously had their eGFR value calculated with a race-inclusive formula.
• Presently accruing waiting time with eGFR, Creatinine Clearance (CrCl), or dialysis criteria (See OPTN Policy 8.3.A) OR are registered without qualifying criteria.
• Transplant program can provide documentation demonstrating that with a race-inclusive calculation, the candidate’s eGFR was over 20 mL/min, but with a race-neutral calculation the candidate’s eGFR would have been 20 mL/min or less.

Eligible candidates may also include:

• Black/African American adult and pediatric candidates registered on the OPTN waiting list.
• Black/African American candidates registered for a Kidney- Pancreas or multi-organ transplant: if they are registered for an isolated kidney.
• Candidates registered on the OPTN waiting list, with multiple races: If one of those races is Black or African- American

Breakdown of Policy Requirements

Tools & Resources

• Educational Offering in the OPTN Learning Management System (also known as UNOS Connect)
  • Course KID118: Waiting Time Modifications for Kidney Candidates Affected by Race- Inclusive eGFR Calculations.
    • Sample candidate notification and attestation documentation
• OPTN Toolkit Waiting Time Modifications for Kidney Candidates Affected by Race- Inclusive eGFR Calculations
  • FAQs for professionals
  • FAQs for patients
  • eGFR implementation webinar
• Examples of race-neutral calculators:
  • Programs may use any eGFR calculator that does not include a race variable.
    • CKD- EPI 2021 has been refit without race by the National Kidney Foundation and American Society of Nephrology
  • GFR Estimate by MDRD-4 variable equation and all other race inclusive calculators can be made race neutral by selecting “No” for “Black Race”
• Sample Notification Letters
  • eGFR Patient Notification Letter – African American Candidates
  • eGFR Patient Notification Letter – Non African American Candidates
  • eGFR Patient Notification Letter – Sample #1
  • eGFR Patient Notification Letter – Sample #2

A SPECIAL THANKS TO THIS ISSUE’S CONTRIBUTORS

We would like to express our sincerest gratitude for our contributors’ tireless efforts on making Transplant Quality Corner a reality. Their dedication and expertise have been an invaluable contribution to the successful launch of this project. We are incredibly grateful for all their hard work and commitment.

A SPECIAL THANKS TO THE TRANSPLANT QUALITY CORNER WORKGROUP