The Impact of Local Programmatic Decisions on Outcomes in Transplant-Listed Adults With Congenital Heart Disease

• Published in: Journal of cardiac failure 2024-09, Vol.30 (9), p.1124-1132
• Main Authors: AKBAR, ARMAAN F., SHOU, BENJAMIN L., KILIC, AHMET, CEDARS, ARI M.
• Format: Article
• Language: English
• Subjects: Adult congenital heart disease; heart transplant; heart-allocation change; waitlist mortality rates
• ISSN: 1071-9164; 1532-8414; 1532-8414
• DOI: 10.1016/j.cardfail.2024.04.001

•A retrospective observational study was performed to examine variables impacting waitlist times and negative waitlist outcomes for adults with congenital heart disease (ACHD) in the modern era.•Compared to other heart-transplant candidates, ACHD candidates had lower priority status at initial listing but not at final listing, suggesting that they rely on status upgrades on the waitlist to receive heart transplants.•ACHD candidates wait longer for transplants overall, wait longer for upgrades on the waitlist and have higher risks of death on the waitlist at the same final waitlist status compared to other candidates.•These results suggest that ACHD candidates may be receiving upgrades on the waitlist too late. We investigated variables impacting waitlist times and negative waitlist outcomes in adults with congenital heart disease (ACHD) who were waiting for orthotopic heart transplant (OHT) after the 2018 allocation change. Adult candidates for OHT who were listed between 10/18/2018 and 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 by using rank-sum tests. Death/delisting for deterioration was assessed by using Fine-Gray subdistribution hazard ratios (SHRs). 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 times on the waitlist. ACHD vs non-ACHD candidates spent longer times 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 to status 1 (9.7 vs 5.5 days = 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 rates of death and deterioration. ACHD candidates have longer waitlist times, have lower priority status at initial listing, wait longer for upgrades, and have higher mortality rates at the same final status as non-ACHD candidates, suggesting that they are being upgraded t