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.

Keywords: Central nervous system; childhood cancer; leukemia; years of life lived with disease; years of potential life lost.

Figure 1

Overall study schematic of analytic pathway using data from the National Vital Statistics System (NVSS) and the Surveillance, Epidemiology and End Results (SEER) program to measure years of potential life lost (YPLL).

Figure 2

(A) Age-adjusted mortality rates and (B) age-adjusted incidence per 100,000 population for selected histologies, (C) total disease attributed deaths for selected histologies, and (D) mean years of productive life lost (YPLL) for persons 0–19 years old in 2009 for selected histologies (National Vital Statistics System [NVSS] and Surveillance, Epidemiology and End Results [SEER]).

Figure 3

(A) Mean years of potential life lost (YPLL) due to selected tumor categories for persons 0–19 years old, (B) mean YPLL for selected central nervous system (CNS) tumor and leukemia histologies, (C) mean years of life lived with disease (YLLD) prior to death for persons 0–19 years old by selected tumor categories, (D) mean YLLD for selected CNS and leukemia histologies, (E) median age at diagnosis death by selected histologies, and (F) median age at diagnosis and death by selected CNS and leukemia histologies (SEER).

Figure 4

Total (A) years of potential life lost (YPLL) and (B) total years of life lived with disease (YLLD) for persons 0–19 years old who died of selected histologic groups by age of diagnosis (SEER).