The Pediatric National Liver Review Board: What Happens to Waitlist Registrations with Denied Exception Forms?
1United Network for Organ Sharing, Richmond, VA, 2Seattle Children's Hospital, Seattle, WA, 3UCSF, San Francisco, CA, 4Mayo Clinic, Rochester, MN
Meeting: 2021 American Transplant Congress
Abstract number: 290
Topic: Clinical Science » Liver » Liver: Pediatrics
Session Information
Session Time: 6:00pm-7:00pm
Presentation Time: 6:05pm-6:10pm
Location: Virtual
*Purpose: On 5/14/19, the exceptions review process for pediatric liver transplant (LT) candidates was changed from 11 Regional Review Boards to one National Pediatric Liver Review Board (NLRB). We categorized reasons for denials for pediatric exceptions submitted to the NLRB and followed waitlist registrations with denied exception forms over time.
*Methods: Reviewer comments for pediatric liver exception requests submitted to the NLRB 5/14/2019-3/31/2020 and subsequently denied were summarized. Exception requests denied for requesting too many points and/or not submitting enough information were followed from 5/14/2019-7/2/2020 at the waitlist registration level to determine action taken after denial. Consecutive exception narratives were programmatically analyzed using Natural Language Processing.
*Results: Since NLRB implementation, 799 pediatric exception forms were submitted; 207 (26%) were denied. Nearly all (97%) were denied for requesting too many exception points and/or not submitting sufficient information (Figure). Of the 128 waitlist registrations that accounted for all 200 of these denied requests, 64 (50%) submitted an appeal, 38 (30%) submitted a new exception request without first submitting an appeal, and 26 (20%) submitted no appeal or new exception. Appeals or ART appeals were often approved (69%, n=44), as well as new cases (84%, n=32). Both appeals and new cases most commonly requested fewer points. In 12 cases no new narrative information was added, 10 of which lowered the amount of points requested. Among the 128 children, 89 (70%) received a transplant, 28 (22%) were still waiting, 3 (2%) were removed for death or too sick, and 8 (6%) were removed for other reasons.
*Conclusions: Nearly all denied exception requests to the Pediatric NLRB were denied for requesting too many points and/or not submitting sufficient information. Adding additional guidance for providers submitting to the Pediatric NLRB could improve efficiency and support children’s access to LT.
To cite this abstract in AMA style:
Foutz J, Martinez C, Henderson A, Hsu EK, Perito ER, Heimbach J. The Pediatric National Liver Review Board: What Happens to Waitlist Registrations with Denied Exception Forms? [abstract]. Am J Transplant. 2021; 21 (suppl 3). https://atcmeetingabstracts.com/abstract/the-pediatric-national-liver-review-board-what-happens-to-waitlist-registrations-with-denied-exception-forms/. Accessed June 27, 2025.« Back to 2021 American Transplant Congress