Estimates of the overall 5-year survival rates for childhood cancers have steadily increased since the 1970s and are currently over 80% . While increased survival rates are promising, cancer treatments don’t just kill cancer cells, they also kill normal healthy tissue cells. Thus, individuals diagnosed with cancer as children (ages 0-19 years) have an increased risk of adverse health and quality of life outcomes compared to individuals of the same age without a cancer history. The goal of our recent study published in Cancer Epidemiology Biomarkers and Prevention is to update the estimates of the number of childhood cancer survivors living in the U.S. and to understand what these survivors look like in terms of, not only their chronic disease burden, but also their cognitive and physical functioning, mental health and quality of life. The motivation behind this was to be able to really shed some light on the magnitude of the issues affecting this population and stimulate future research to figure out how to help prevent or delay the onset of the problems they face.
Our study results indicate that there are approximately 388,501 childhood cancer survivors in the United States, which is an increase of 59,849 from the previous estimate made in 2005. Of these survivors, about 84% had survived five or more years post-diagnosis. About 70% of the survivors of childhood cancers were estimated to have a mild/moderate chronic condition, and about 32% were estimated to have a severe, disabling, or life-threatening chronic condition. An estimated 35% of the survivors, ages 20 to 49, had neurocognitive dysfunction; about 13% to 17% of those in this age group had self-reported functional impairment, activity limitations, impaired mental health, pain, or anxiety/fear.
The fact that many of the indicators of morbidity we examined increased with age was not altogether surprising. However, when you look at the age of these survivors, the magnitude of these morbidities at relatively young ages is quite striking. Typically, you would not expect many of these morbidities to be a problem in the general population until much older ages. 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 multi-level factors including, but not limited to, physical activity, diet and treatment characteristics, that influence childhood cancer survivors’ susceptibility to these morbidities in order to effectively prevent and delay their onset. It doesn’t just stop there, however. We also need to figure out how to incorporate effective clinical models of care coordination and rehabilitation so effective programs can be developed to optimize longevity and well-being in this population.
We have made great strides in prolonging the lives of children diagnosed with cancer. Now, we also need to make sure these children are not just surviving, but thriving.
Siobhan Phillips, PhD, MPH is an Assistant Professor in the Division of Behavioral Medicine in the Department of Preventive Medicine at Northwestern University. Dr. Phillip’s interdisciplinary research is focused on understanding the determinants and outcomes of physical activity participation and the translation of this research into practice with a particular focus on aging and cancer survivorship. Dr. Phillips has published over 50 articles in the areas of aging, cancer and implementation sciences. Dr. Phillips obtained a PhD in Kinesiology from the University of Illinois Urbana Champaign and a MPH in Quantitative Methods from Harvard University and completed a postdoctoral research fellowship with the Cancer Prevention Fellowship Program at the National Cancer Institute.