title: Years of life lived with disease and years of potential life lost in children who die of cancer in the United States, 2009.
abstract: Incidence and survival rates are commonly reported statistics, but these may fail to capture the full impact of childhood cancers. We describe the years of potential life lost (YPLL) and years of life lived with disease (YLLD) in children and adolescents who died of cancer in the United States to estimate the impact of childhood cancer in the United States in 2009. We examined mortality data in 2009 among children and adolescents <20 years old in both the National Vital Statistics System (NVSS) and the Surveillance, Epidemiology, and End Results (SEER) datasets. YPLL and YLLD were calculated for all deaths due to cancer. Histology-specific YPLL and YLLD of central nervous system (CNS) tumors, leukemia, and lymphoma were estimated using SEER. There were 2233 deaths and 153,390.4 YPLL due to neoplasm in 2009. CNS tumors were the largest cause of YPLL (31%) among deaths due to cancer and were the cause of 1.4% of YPLL due to all causes. For specific histologies, the greatest mean YPLL per death was due to atypical teratoid/rhabdoid tumor (78.0 years lost). The histology with the highest mean YLLD per death in children and adolescents who died of cancer was primitive neuroectodermal tumor (4.6 years lived). CNS tumors are the most common solid malignancy in individuals <20 years old and have the highest YPLL cost of all cancers. This offers the first histology-specific description of YPLL in children and adolescents and proposes a new measure of cancer impact, YLLD, in individuals who die of their disease. YPLL and YLLD complement traditional indicators of mortality and help place CNS tumors in the context of other childhood malignancies.
authors: Department of Pediatric Hematology-Oncology, Rainbow Babies and Children's Hospital, 11100 Euclid Ave, Cleveland, Ohio; Case Comprehensive Cancer Center, Case Western Reserve University School of Medicine, 11100 Euclid Ave, Cleveland, Ohio.
authors: Peter M
authors: PM
authors: de Blank
authors: Quinn T
authors: QT
authors: Ostrom
authors: Chaturia
authors: C
authors: Rouse
authors: Yingli
authors: Y
authors: Wolinsky
authors: Carol
authors: C
authors: Kruchko
authors: Joanne
authors: J
authors: Salcido
authors: Jill S
authors: JS
authors: Barnholtz-Sloan
mesh_terms: D000293:Adolescent; D002648:Child; D002675:Child, Preschool; D005260:Female; D006801:Humans; D007223:Infant; D007231:Infant, Newborn; D008017:Life Expectancy; D008297:Male; D061213:Mortality, Premature; D009369:Neoplasms / Q000401:mortality*; D017678:Sex Distribution; D015996:Survival Rate; D014481:United States / Q000453:epidemiology; D055815:Young Adult
keywords: Central nervous system; childhood cancer; leukemia; years of life lived with disease; years of potential life lost
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