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5-Tier System Moving from Beta Site to Public Site

MINNEAPOLIS ― January 16, 2019 ― In December 2016, SRTR launched a new website that displayed a new 5-tier outcome assessment for all transplant programs in the United States. This new system, which replaced a 3-tier system, was developed over a period of 5 years and approved by SRTR’s Visiting Committee (SVC). However, in response to community feedback, the 5-tier system was moved to a beta website in February 2017, and was replaced by the previous 3-tier system on the main SRTR website. The intent of the beta site was to allow for more feedback and to consider additional improvements.

After applying multiple improvements based on feedback received, SRTR also recently called for public comment on the beta site changes and collected additional feedback for a period of 60 days (May 14, 2018 to July 13, 2018). Changes were made in response to the feedback received, and SRTR is pleased to announce that after receiving both HRSA and SVC approval, the 5-tier outcome assessment system will be moving from the beta site to the public site on February 5, 2019.

In response to the feedback and SVC’s recommendations, changes made include:

1. Five-tier assessments for waitlist mortality and deceased donor transplant rate have been added, in response to feedback that the new system placed too much emphasis on first-year transplant outcomes. Additional feedback received advocated not to provide a waitlist mortality tier for kidney candidates because kidney programs do not care for candidates as directly as other organ types, so SRTR removed the waitlist mortality tier for kidney programs.

2. The transplant rate is now based on deceased donor transplants only, rather than on both deceased and living donor transplants, in response to feedback that the combined transplant rate was potentially misleading to patients without a living donor.

3. Living donor transplant counts for liver and kidney programs are now displayed alongside the deceased donor transplant counts, in response to feedback that the site should prominently display programs that perform more living donor transplants.

4. Various improvements to educational materials provided alongside the search results have been made, including 1) improved explanatory text for each outcome as determined through patient focus groups; 2) a key that shows expected outcomes for programs in each tier for waitlist mortality, transplant rate, and first-year graft survival; 3) an indicator showing which outcome has the greatest overall impact on survival after listing for each organ; 4) removal of interpretive text previously provided with each tier, e.g., “worse than expected,” “better than expected.”

You can currently view detailed information about these updates/changes on our beta site, and the 5-tier system will soon become available on the public website. These changes were made following feedback received from the community and vetted through patient focus groups and randomized trials of various website iterations during 2017 and 2018. SRTR continues to welcome feedback and is always looking for ways to improve the program assessments in place. Contact us with any questions or comments at srtr@srtr.org.

Data definition process in place to bring clarity and consistency to transplant forms

Audience

All UNetSM users who complete OPTN data collection forms

Implementation

January 15, 2019; quarterly updates

At-a-glance

A cross-functional team of UNOS staff and OPTN members is working on a data governance initiative to improve the consistency and quality of OPTN data collection. The first set of data definitions using a new format are published in UNet online Help as of January 15, 2019.

We will provide a list of revised definitions each quarter, to answer member questions about existing data fields and to clarify new requirements.

More details

This effort aims to provide clear, concise data definitions, improve quality of data, and provide transparency into changes. Clarifications are intended to provide guidance for future data entry; you are not required to amend data submitted before the collection date. The process to create revised data definitions includes reviews by multidisciplinary UNOS staff and the Data Advisory Committee.

Summary of definition changes

Data Element System Form Description
Gender TIEDI®
DonorNet®
KPDSM
DDR and LDR
DNR
Add/Edit Donor
Intent is to collect biologic and physiologic traits (sex) at birth.
Total Cold Ischemic Time TIEDI® Liver TRR Cold ischemic time starts when the organ is cross-clamped and ends when it is first perfused with warm recipient blood (i.e. first clamp removed in situ). Previous to this change, the hepatic artery and portal vein clamps both had to be removed before ischemic time ended.
Prior Cardiac Surgery (non-transplant) TIEDI® Heart, Lung and Heart-Lung TCR VAD should be included in the report of previous cardiac surgeries.
Time of implant/initiation WaitlistSM Adult Heart Status Justification Form New data collection element released, initial definition established with implementation of heart allocation policy on 10/18/2018.
Patient Using Either Oral Medication or Diet for Blood Sugar Control TIEDI® Pancreas and Kidney-Pancreas TRR and TRF Any anti-hyperglycemic medications should be listed in this field, including oral and non-insulin injectables.

Where to find the info in Help Documentation

Access Secure Enterprise and then choose TIEDI. On the menu, choose Help and click Online Help. Details can be found under Manage Data – Data Definitions and History of Definition Changes. Record Field Descriptions have also been updated to include each data element.

Background

The OPTN’s secure transplant information database contains all national data on the candidate waiting list, organ donation and matching, and transplantation. Organ transplant institutions use the system to match waiting candidates with donated organs. Institutions also rely on the database to manage time-sensitive, life-critical data, before and after their patients’ transplants.

Contact

If you have questions, please contact UNOS Customer Service at (800) 978-4334 or unethelpdesk@unos.org.

National Liver Review Board to be implemented Jan. 31, 2019

Audience:
Liver transplant program directors, surgeons, physicians, administrators, clinical coordinators and data coordinators

Implementation date:
January 31, 2019

At-a-glance
The National Liver Review Board (NLRB) will begin operation on this date. The original NLRB proposal is addressed in this policy notice; some refinements were addressed in the liver distribution policy approved in December 2018, as noted in this briefing paper.

The system will collect additional data for certain standard exceptions, allowing more exceptions to be automatically approved. Requests for custom exceptions will be considered in relation to the median score at transplant (median MELD at transplant (MMaT) for recent MELD recipients listed at centers within a 250 nautical mile radius of your transplant program; national median PELD at transplant (MPaT) for all recent PELD recipients). UNOS will calculate and publish MMaT and MPaT scores approximately January 17 and update them approximately every 180 days thereafter.

NLRB members will use guidance documents available here to assess the most common types of exceptions.

Candidate exception scores that are current as of the implementation date will remain the same until the current exception expires. All requests for new or extension exception scores after that date will follow the new criteria and scoring model.

Find more specific information below about what will be different beginning Jan. 31.

What you should know about the NLRB

The NLRB will be comprised of three specialty boards: Adult HCC, Adult Other Diagnosis, and Pediatrics.

Every active liver transplant program may appoint a representative and alternate to each of the adult specialty boards. A liver transplant program with an active pediatric component may appoint a representative and an alternate to the pediatric specialty board.  If you have not already submitted your representative(s), you may do so using this form.

Please be aware of the new guidance and educate your staff on the new scoring for standardized exception requests.  Please also communicate with your candidates who have existing exception scores.

If you are submitting information for a standardized exception, please submit the required information in discrete data fields in UNetSM instead of the narrative form used up until NLRB implementation.

Resources

  • Various resources are available in the implementation toolkit. They will be updated and new resources will continue to be added in coming weeks.
  • Access all the available policy and system trainings in UNOS Connect from the course catalog; Liver category
  • National Liver Review Board Policy: MELD/PELD Exception Scoring
  • National Liver Review Board Policy: New Processes
  • NLRB training for review board representatives

 Questions?
If you have questions about how to submit exception forms, contact UNOS Customer Service at 800-978-4334.  For policy-related questions, send an e-mail to member.questions@unos.org or call 844-395-4428.

 

 

 

 

Calling for National Donor Memorial Award for Excellence Nominations

UNOS invites OPOs and transplant centers to submit nominations for the tenth National Donor Memorial Award for Excellence, which recognizes an unsung hero (an individual or a couple). Nominees often are a donor parent, recipient, living donor or volunteer–anyone who has gone “above and beyond” to promote organ donation and transplantation, with little public recognition.

Each organization is limited to one entry. Submit your entry to Michelle Tolliver in UNOS’ Marketing and Public Relations department by Tuesday, March 19. You can renominate past candidates who were not selected as winners.

.UNOS will present the 2019 award at an evening reception during the June 10, meeting of the OPTN/UNOS Board of Directors in Richmond, VA.

The award winner and a guest, along with a representative from the nominating organization, will receive round-trip travel to Richmond and overnight accommodations. We’ll notify the OPO or transplant center that submits the winning nomination by the end of April. Every nominating OPO/transplant center will receive a Certificate of Nomination and a small gift for its nominee, recognizing his or her outstanding contributions to organ donation and transplantation.

For more information, call Michelle Tolliver at (804) 782-4865 or email her.

Organ transplants in United States set sixth consecutive record in 2018

The 36,527 organ transplants performed in the United States in 2018 set an annual record for the sixth straight year, according to preliminary data from United Network for Organ Sharing (UNOS), which serves as the national Organ Procurement and Transplantation Network (OPTN) under federal contract. In 2018, the total number of organ transplants exceeded 750,000 performed since 1988, the first full year national transplant data were collected.

The number of transplants, using organs from both deceased and living donors, increased five percent over 2017. Approximately 81 percent (29,680) of the transplants performed in 2018 involved organs from deceased donors. Living donor transplants accounted for the remaining 19 percent (6,849). The number of living donor transplants represented the highest total since 2005 and increased nearly 11 percent over 2017.

“We are incredibly proud and grateful to have facilitated a record number of lifesaving organ transplants in 2018,” said Sue Dunn, president of the OPTN/UNOS Board of Directors. “We never forget that our work is made possible by the selfless donors and their courageous families who make the powerful decision to give the gift of life. We will continue to work tirelessly to maximize that gift on behalf of the nearly 114,000 who await a transplant.”

In 2018, 10,721 people provided one or more organs for transplantation as deceased organ donors. This was a four percent increase over the 2017 total, and it continues an eight-year trend of record-setting donation.

While the number of potential deceased organ donors varies among different areas of the country due to differences in population size and medical characteristics, increases were noted in many areas. Of the 58 organ procurement organizations (OPOs) coordinating deceased organ donation nationwide, 41 (70 percent) experienced an increase in donors from 2017 to 2018, including at least one OPO in each of UNOS’ 11 regions.

“A key to continuing the success of the field is to support efficient decision-making and improve communications among OPOs and transplant centers,” said Brian Shepard, Chief Executive Officer of UNOS. “We are working on a number of innovation projects to increase the efficiency of these key processes.”

As in several previous years, some of the increase in deceased donation is due to increased usage of donors with a broader set of medical criteria than was considered in the past. Nearly 20 percent of donors in 2018 donated after circulatory death as opposed to brain death. Nine percent of deceased donor kidney transplants involved organs with a kidney donor profile index (KDPI) score of 86 or higher, which may function less time compared to low KDPI kidney offers but may also shorten the waiting time for transplant candidates. Other donor characteristics setting all-time records in 2018 included an age of 50 or older and/or being identified as having increased risk for blood-borne disease.

OPTN/UNOS operations not affected by partial federal shutdown

UNOS, which serves as the Organ Procurement and Transplantation Network (OPTN) under federal contract, continues to provide all services without interruption despite the shutdown of some federal government functions that began December 22, 2018. All UNetSM applications and the donor matching system remain operational, and all UNOS staff will continue to maintain their regular schedules.

Should there be any need for an update in the longer term, we will inform you at that time.