Utilization of Exception Requests After Implementation of the National Heart Review Board for Pediatrics

TL;DR

A study found that most heart transplant exception requests for children followed guidelines and had high approval rates, but exceptions outside the guidelines were also frequently approved.

Contribution

This study evaluates the utilization and approval rates of heart transplant exception requests after the implementation of a national pediatric review board.

Findings

The overall approval rate of exception requests was 91%.

1A exceptions following guidance had a significantly higher approval rate (97%) compared to those not following guidance (62%).

Most 1B exceptions were for single ventricle congenital heart disease, despite limited guidance for other conditions like cardiomyopathy.

Abstract

In 2020, the Organ Procurement and Transplantation Network authorized the creation of a National Heart Review Board for Pediatrics along with a guidance document. The purpose of this study was to evaluate the utilization of exception requests and approval rates after the implementation of the new review board.

This was a retrospective review of 1A and 1B exception requests between June 2021 and January 2023. Exception request narratives were reviewed to determine if the request followed guidance and then analyzed the frequency of those approved by diagnosis.

There were 591 exception requests submitted for 419 candidates with an overall approval rate of 91%. Only 55% of the exceptions followed the guidance, but of those, 97% were approved. Exceptions submitted that did not follow the guidance had a lower approval rate of 85%. 1A exception requests that followed the guidance were significantly more likely to be approved than those that did not (97% vs. 62%, respectively, p < 0.05). For 1B requests, approval rates did not differ between requests that followed the guidance and those that did not (98% vs. 95%, respectively, p = 0.15). Candidates with single ventricle congenital heart disease made up 59% of 1B exception requests. There is no 1B exception guidance for candidates with dilated or hypertrophic cardiomyopathy; however, requests were still submitted and 95% were approved.

Most status 1A exceptions being granted followed the guidance document from OPTN. While the greatest number of requests for 1B exceptions were for single ventricle physiology candidates, many exceptions outside the guidance are being sought and granted.

The overall approval rate of exception requests was 91%. Most status 1A exceptions being granted followed guidelines, which address four underlying diagnosis categories. While the greatest number of requests for 1B exceptions were for single ventricle physiology candidates, many exceptions outside the guidance document are sought and granted.

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