Waiting List Mortality Among Children Listed for Heart Transplantation in the United States

• Published in: Circulation (New York, N.Y.) Vol. 119; no. 5; pp. 717 - 727
• Main Authors: ALMOND, Christopher S. D, THIAGARAJAN, Ravi R, PIERCEY, Gary E, GAUVREAU, Kimberlee, BLUME, Elizabeth D, BASTARDI, Heather J, FYNN-THOMPSON, Francis, SINGH, T. P
• Format: Journal Article
• Language: English
• Published: Hagerstown, MD Lippincott Williams & Wilkins 10.02.2009
• Subjects: Adolescent; Arterial hypertension. Arterial hypotension; Biological and medical sciences; Blood and lymphatic vessels; Cardiology. Vascular system; Child; Child, Preschool; Clinical manifestations. Epidemiology. Investigative techniques. Etiology; Cohort Studies; Diseases of the peripheral vessels. Diseases of the vena cava. Miscellaneous; Extracorporeal Membrane Oxygenation - statistics & numerical data; Female; Heart Failure - mortality; Heart Failure - surgery; Heart Transplantation - statistics & numerical data; Heart-Assist Devices; Humans; Infant; Kaplan-Meier Estimate; Male; Medical sciences; Multivariate Analysis; Predictive Value of Tests; Registries - statistics & numerical data; Resource Allocation - statistics & numerical data; Respiration, Artificial - statistics & numerical data; Risk Factors; United States - epidemiology; Waiting Lists; United States; North America; America; Human; Heart failure; transplantation, heart; Heart disease; Mortality; heart-assist devices; pediatrics; Cardiovascular disease; Child; Survival
• ISSN: 0009-7322; 1524-4539
• DOI: 10.1161/CIRCULATIONAHA.108.815712

Children listed for heart transplantation face the highest waiting list mortality in solid-organ transplantation medicine. We examined waiting list mortality since the pediatric heart allocation system was revised in 1999 to determine whether the revised allocation system is prioritizing patients optimally and to identify specific high-risk populations that may benefit from emerging pediatric cardiac assist devices. We conducted a multicenter cohort study using the US Scientific Registry of Transplant Recipients. All children <18 years of age who were listed for a heart transplant between 1999 and 2006 were included. Among 3098 children, the median age was 2 years (interquartile range 0.3 to 12 years), and median weight was 12.3 kg (interquartile range 5 to 38 kg); 1294 (42%) were nonwhite; and 1874 (60%) were listed as status 1A (of whom 30% were ventilated and 18% were on extracorporeal membrane oxygenation). Overall, 533 (17%) died, 1943 (63%) received transplants, and 252 (8%) recovered; 370 (12%) remained listed. Multivariate predictors of waiting list mortality include extracorporeal membrane oxygenation support (hazard ratio [HR] 3.1, 95% confidence interval [CI] 2.4 to 3.9), ventilator support (HR 1.9, 95% CI 1.6 to 2.4), listing status 1A (HR 2.2, 95% CI 1.7 to 2.7), congenital heart disease (HR 2.2, 95% CI 1.8 to 2.6), dialysis support (HR 1.9, 95% CI 1.2 to 3.0), and nonwhite race/ethnicity (HR 1.7, 95% CI 1.4 to 2.0). US waiting list mortality for pediatric heart transplantation remains unacceptably high in the current era. Specific high-risk subgroups can be identified that may benefit from emerging pediatric cardiac assist technologies. The current pediatric heart-allocation system captures medical urgency poorly. Further research is needed to define the optimal organ-allocation system for pediatric heart transplantation.