The impact of local programmatic decisions on outcomes in transplant-listed adults with congenital heart disease.

BACKGROUND: We investigated variables impacting waitlist time and negative waitlist outcomes in adult congenital heart disease (ACHD) orthotopic heart transplant (OHT) candidates following the 2018 allocation change.

METHODS: Adult OHT candidates listed between 10/18/2018-12/31/2022 in the United Network for Organ Sharing database were categorized as ACHD vs. non-ACHD. Waitlist time and time to upgrade for those upgraded into status 1-3 were compared using rank-sum tests. Death/delisting for deterioration was assessed using Fine-Gray sub-distribution hazard ratios (SHRs).

RESULTS: Of 15,424 OHT candidates, 589 (3.8%) were ACHD. ACHD vs. non-ACHD candidates had less urgent status at initial listing (4.2% vs. 4.7% listed at status 1; 17.2% vs. 23.7% listed at status 2, p<0.001), but not final listing (5.9% vs. 7.6% final status 1; 35.6% vs. 36.8% final status 2, p<0.001). ACHD vs. non-ACHD candidates upgraded into status 1 (65.0 vs. 30.0 days, p=0.09) and status 2 (113.0 vs. 64.0 days, p=0.003) spent longer on the waitlist. ACHD vs. non-ACHD candidates spent longer waiting for an upgrade into status 1 (51.4 vs. 17.6 days, p=0.027) and status 2 (76.7 vs. 34.7 days, p=0.003). Once upgraded, there was no difference between groups in waitlist time as status 1 (9.7 vs. 5.5 days, p=0.66). ACHD vs. non-ACHD candidates with a final status of 1 (20.0% vs. 8.6%; SHR 2.47 [95%CI=1.19-5.16], p=0.02) and 2 (8.9% vs. 2.3%; SHR 3.59 [95%CI=2.18-5.91], p<0.001) experienced higher death/deterioration.

CONCLUSIONS: ACHD candidates have longer waitlist times, lower priority status at initial listing, wait longer for upgrade, and have higher mortality at the same final status as non-ACHD candidates, suggesting that they are being upgraded too late.