The prevalence of childhood cancer survivors is estimated to have increased, and the majority of those who have survived five or more years beyond diagnosis may have at least one chronic health condition.
The goal of the study was to update prevalence estimates of childhood cancer survivors in the United States and estimate the burden of morbidity among those who survived five years or longer since diagnosis, according to Phillips. The study has been published in Cancer Epidemiology, Biomarkers & Prevention.
The researchers used cancer incidence and survival data recorded between 1975 and 2011 from nine U.S. Surveillance, Epidemiology, and End Results (SEER) registries, and data from the Childhood Cancer Survivor Study (CCSS) cohort that had information on a range of potential adverse and late effects of cancer treatment from more than 14,000 long-term survivors of childhood cancers at 26 cancer centers across the United States and Canada. They first obtained estimates of the probability of each measure of morbidity from CCSS and then multiplied these estimates by the relevant number of survivors in the United States estimated from the SEER data.
Phillips and colleagues estimated the number of childhood cancer survivors in the United States to be 388,501, which is an increase of 59,849 from the previous estimate made in 2005 by a team from the National Cancer Institute (NCI). Of these survivors, about 84 percent had survived five or more years post-diagnosis.
About 70 percent of the survivors of childhood cancers were estimated to have a mild or moderate chronic condition, and about 32 percent were estimated to have a severe, disabling, or life-threatening chronic condition. An estimated 35 percent of the survivors, ages 20 to 49, had neurocognitive dysfunction; about 13 to 17 percent of those in this age group had self-reported functional impairment, activity limitations, impaired mental health, pain, or anxiety/fear.
In an interview, Phillips said, "Our study findings highlight that a singular focus on curing cancer yields an incomplete picture of childhood cancer survivorship. The burden of chronic conditions in this population is profound, both in occurrence and severity. Efforts to understand how to effectively decrease morbidity burden and incorporate effective care coordination and rehabilitation models to optimize longevity and well-being in this population should be a priority. We know that many of these morbidities are at least somewhat modifiable in the general population. However, we don't know if typical population guidelines for preventive behaviors apply to this group. We need to develop a better understanding of the multilevel factors including, but not limited to, physical activity, diet, and treatment characteristics, which influence childhood cancer survivors' susceptibility to these morbidities in order to effectively prevent and delay their onset."
This study was a collaboration among Northwestern University, the NCI, and St. Jude Children's Research Hospital. This study was funded by the National Institutes of Health. Phillips declares no conflicts of interest.