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- Definition: Probability of children/youth ages 0-19 diagnosed with cancer surviving for at least 5 years in the absence of other causes of death, by race/ethnicity (e.g., among Hispanic/Latino children and youth in California diagnosed with cancer between 2005-2015, 80.8 out of 100 are likely to live for at least 5 years after diagnosis).
- Data Source: National Cancer Institute, Surveillance, Epidemiology, and End Results (SEER) Program Research Data (Nov. 2017).
- Footnote: The notation S refers to data that have been suppressed because there were fewer than 20 cases. See the National Cancer Institute website for more information on cancer survival statistics.
Learn More About Cancer
- Measures of Cancer on Kidsdata.org
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Kidsdata.org provides the following data on childhood cancer:
- Childhood Cancer Diagnoses, as numbers and as rates per 100,000 children ages 0-19, are shown for five-year periods. These data also can be viewed by Age Group, by Age Group and Race/Ethnicity, and by Age Group and Type of Cancer.
- Net Five-Year Cancer Survival Rates, which measure the probability that children ages 0-19 diagnosed with cancer survive for at least five years in the absence of other causes of death, are shown for eleven-year periods. These data can be viewed by Race/Ethnicity and by Type of Cancer.
Cancer types are derived from the International Classification of Childhood Cancer. See the National Cancer Institute website for definitions. -
- Cancer
- Characteristics of Children with Special Needs
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- Children with Special Health Care Needs
- Children with and without Special Health Care Needs Who Are Overweight or Obese (California & U.S. Only)
- Children with Special Health Care Needs with One or More Adverse Experiences
- Children with Special Health Care Needs Who Are Usually/Always Resilient
- Prevalence of Special Health Care Needs Among Children, by Type of Health Insurance (California & U.S. Only)
- Four or More Functional Difficulties Among Children with Special Health Care Needs, by Type of Health Insurance (California & U.S. Only)
- Emotional or Behavioral Difficulties Among Children with Special Health Care Needs (California & U.S. Only)
- Children with Major Disabilities
- Children with and without Major Disabilities, by Health Insurance Coverage Status
- Active California Children's Services (CCS) Enrollees, by Age Group
- Access to Services for Children with Special Needs
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- Preventive Medical Visits for Children with Special Health Care Needs (California & U.S. Only)
- Usual Source of Health Care for Children with Special Health Care Needs (California & U.S. Only)
- Early Intervention or Special Education Services for Children with Special Health Care Needs (California & U.S. Only)
- School Provides Services for Students with Special Needs (Staff Reported)
- Children with Special Health Care Needs Who Need Five or More Services (California & U.S. Only)
- Receipt of Mental Health Services Among Children with Special Health Care Needs Who Need Treatment or Counseling (California & U.S. Only)
- Difficulty Getting Referrals to Specialty Care for Children with Special Health Care Needs (California & Other States Only)
- Unmet Needs for Services Among Children with Special Health Care Needs (California & U.S. Only)
- Unmet Needs for Preventive Dental Care Among Children with Special Health Care Needs (California & U.S. Only)
- Difficulty Accessing Community-Based Services for Children with Special Health Care Needs (California & Other States Only)
- Transition to Adulthood Services for Youth with Special Health Care Needs (California & Other States Only)
- Health Insurance Coverage for Children with Special Health Care Needs
- Impacts of Special Health Care Needs on Children and Families
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- Children with Special Health Care Needs Whose Conditions Consistently Affect Their Daily Activities (California & Other States Only)
- School Days Missed Among Children with Special Health Care Needs (California & U.S. Only)
- Repeated Grades in School, by Special Needs Status (California & U.S. Only)
- Overnight Hospital Stays Among Children with Special Health Care Needs (California Only)
- Children with Special Health Care Needs Whose Families Spend 11 or More Hours per Week Providing Care (California & Other States Only)
- Children Whose Parents Feel Aggravation from Parenting, by Special Needs Status (California & U.S. Only)
- Children with Special Health Care Needs Whose Family Members Avoid Changing Jobs to Maintain Health Insurance (California & U.S. Only)
- Children with Special Health Care Needs Whose Health Impacts Family Members' Employment (California & U.S. Only)
- Out-of-Pocket Medical Expenses for Children with Special Health Care Needs, by Type of Health Insurance (California & U.S. Only)
- Children with Special Health Care Needs Whose Conditions Cause Family Financial Problems (California & Other States Only)
- Deaths
- Quality of Care for Children with Special Health Care Needs
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- Receipt of Care Within a Medical Home for Children with Special Health Care Needs (California & U.S. Only)
- Receipt of Needed Care Coordination for Children with Special Health Care Needs (California & U.S. Only)
- Receipt of Family-Centered Care for Children with Special Health Care Needs (California & U.S. Only)
- Children with Special Health Care Needs Whose Families Are Partners in Shared Decision Making with Providers (California & Other States Only)
- Children with Special Health Care Needs Who Receive Care Meeting Federal Minimum Quality Standards (California & Other States Only)
- Health Care
- Hospital Use
- Why This Topic Is Important
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Advances in the treatment of childhood cancers during the past 50 years have led to remarkable improvements in survival rates, but despite these advances more U.S. children and adolescents ages 1-19 die of cancer than any other disease (1). After accidents, suicide, and homicide, cancer is the leading cause of death among young people past infancy nationwide (2). In California, it is estimated that more than 1,700 children ages 0-19 are diagnosed with cancer each year (3). Approximately 1 in every 265 children in the state will develop some form of cancer before they reach age 20 (3).
The majority of children diagnosed with cancer survive into adulthood (1, 3). Children treated at pediatric institutions that provide intensive treatment, supportive care, and psychosocial services are more likely to have positive outcomes than those treated elsewhere.For more information on childhood cancer, see kidsdata.org’s Research & Links section.
Sources for this narrative:
1. National Cancer Institute. (n.d.). Cancer in children and adolescents. National Institutes of Health. Retrieved from: https://www.cancer.gov/types/childhood-cancers/child-adolescent-cancers-fact-sheet
2. National Center for Injury Prevention and Control. (2017). Leading causes of death reports, 1981-2016. Centers for Disease Control and Prevention. Retrieved from: https://webappa.cdc.gov/sasweb/ncipc/leadcause.html
3. American Cancer Society, & et al. (2017). California cancer facts and figures 2017. Retrieved from: https://www.cancer.org/content/dam/cancer-org/online-documents/en/pdf/reports/california-facts-figures-2017.pdf - How Children Are Faring
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Between 2011 and 2015, 9,186 California children and adolescents ages 0-19 were diagnosed with cancer. The rate of new cancer diagnoses statewide increased from 16.5 per 100,000 children in 2000-2004 to 17.9 per 100,000 in 2011-2015, echoing a similar rise in diagnoses at the national level. Adolescents ages 15-19 generally have higher rates of cancer diagnoses than children ages 0-14. White children also tend to have the highest rate of cancer diagnoses among racial/ethnic groups with data.
Over the last decade, leukemia consistently has been the most common type of cancer among children in California, with the majority of diagnoses occurring before age 15. The five-year survival rate for leukemia—82% for 2005-2015—is similar to the general survival rate for childhood cancers. Racial/ethnic inequities persist in childhood cancer survival rates, with white children having higher probabilities of surviving for at least five years after diagnosis than children in other groups. - Policy Implications
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Public policy plays a role in maximizing positive health outcomes and quality of life for children with cancer and their families. The Affordable Care Act addresses cancer treatment and prevention in several ways—including no lifetime caps on care, no denials based on pre-existing conditions, and the elimination of copays for prevention services—but there are a number of areas where policy changes can further improve services for children with cancer (1, 2). Policies can promote equitable, appropriate, and affordable access to diagnosis and therapies, support research to enhance prevention and treatment, and ensure that survivors of childhood cancer receive appropriate care for the late effects of the disease and its treatment, including risk factors for subsequent malignancies.
Policy options include:- Ensuring that all pediatric cancer patients, regardless of race/ethnicity or family income, have consistent access to affordable health care that is evidence-based, well-coordinated, family-centered, and provided in the context of a medical home; access to care coordination services, in particular, is critical, as these children and their families need to navigate through an array of services and programs (2, 3)
- Supporting pediatric centers of excellence in which well-trained teams of health care professionals collaborate to improve care, and providing adequate reimbursement for specialized services (4, 5, 6)
- Improving quality of life services for pediatric cancer patients and their families as they face complex challenges, such as physically taxing treatments, time-consuming and costly travel to health-related appointments, limited ability to participate in typical childhood activities, and increased family stress; psychosocial and other support services are an essential part of high quality pediatric cancer team-based care, especially for those facing terminal cancer (7)
- Ensuring access to comprehensive palliative care and hospice services when a cure is not possible (7)
- When cancer survivors reach adulthood, ensuring access to services to help with the transition from pediatric to adult care; these youth also may need assistance with employment or education, or the transition to self-sufficiency (4)
- Working toward a unified, efficient and comprehensive payment system for cancer treatment; currently, families must navigate a complicated web of service systems with confusing payment policies, which can result in delayed or denied services for children and financial hardship for families (4)
- Supporting continued pediatric cancer research that can promote advances in understanding cancer risk factors and treatments (5, 8)
- Establishing federal policies to assure that drugs used to treat childhood cancer are available, consistently tested on the youth they are intended to treat, and not limited due to the smaller market these children represent (9)
For more policy ideas related to children with cancer, see kidsdata.org’s Research & Links section. Also see Policy Implications under Access to Services for Children with Special Needs and Health Care.
Sources for this narrative:
1. American Society of Clinical Oncology. (2018). The Affordable Care Act and cancer. Retrieved from: https://www.cancer.net/navigating-cancer-care/financial-considerations/affordable-care-act-and-cancer
2. Moy, B., et al. (2011). Opportunities in the Patient Protection and Affordable Care Act to reduce cancer care disparities. Journal of Clinical Oncology 29(28), 3816-3824. Retrieved from: http://ascopubs.org/doi/10.1200/JCO.2011.35.8903
3. U.S. Department of Health and Human Services, Maternal and Child Health Bureau. (2013). CSHCN core system outcomes: Goals for a system of care. In The National Survey of Children with Special Health Care Needs chartbook 2009-2010. Retrieved from: https://mchb.hrsa.gov/cshcn0910/core/co.html
4. Smith, K., et al. (2009). California's service system for children and youth with special health care needs: Analysis and recommendations for a service system that works for children and families. Lucile Packard Foundation for Children's Health. Retrieved from: https://www.lpfch.org/publication/californias-service-system-children-and-youth-special-health-care-needs
5. Hay, W. W., et al. (2010). Child health research funding and policy: Imperatives and investments for a healthier world. Pediatrics 125(6), 1259-1265. Retrieved from: http://pediatrics.aappublications.org/content/125/6/1259
6. American Academy of Pediatrics Section on Hematology/Oncology. (2014). Standards for pediatric cancer centers. Pediatrics, 134(2), 410-414. Retrieved from: http://pediatrics.aappublications.org/content/134/2/410
7. American Academy of Pediatrics Committee on Bioethics and Committee on Hospital Care. (2000). Palliative care for children. Pediatrics, 106(2), 351-357. Retrieved from: http://pediatrics.aappublications.org/content/106/2/351
8. Smith, M. A., et al. (2010). Outcomes for children and adolescents with cancer: Challenges for the twenty-first century. Journal of Clinical Oncology, 28(15), 2625-2634. Retrieved from: http://ascopubs.org/doi/10.1200/JCO.2009.27.0421
9. U.S. Food and Drug Administration. (2016). Drug research and children. Retrieved from: https://www.fda.gov/Drugs/ResourcesForYou/Consumers/ucm143565.htm
- Research & Links
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- Websites with Related Information
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- American Cancer Society: Cancer in Children
- American Childhood Cancer Organization
- Cancer Action Network. American Cancer Society.
- Children’s Oncology Group
- Comprehensive Cancer Control Program. California Dept. of Public Health.
- CureSearch for Children’s Cancer
- Lucile Packard Children’s Hospital: Pediatric Cancer
- National Cancer Institute: Childhood Cancers. National Institutes of Health.
- OncoLink. Penn Medicine.
- Key Reports and Research
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- A Blueprint for the Primary Prevention of Cancer: Targeting Established, Modifiable Risk Factors. (2018). CA: A Cancer Journal for Clinicians. Gapstur, S. M., et al.
- Adolescent and Young Adult Oncology—Past, Present, and Future. (2019). CA: A Cancer Journal for Clinicians. Close, A. G., et al.
- Advancing a Comprehensive Cancer Care Agenda for Children and Their Families: Institute of Medicine Workshop Highlights and Next Steps. (2016). CA: A Cancer Journal for Clinicians. Kirch, R., et al.
- Building Systems That Work for Children with Complex Health Care Needs. (2018). Pediatrics. Agrawal, R., & Stille, C. (Eds.)
- California Cancer Facts & Figures 2017. American Cancer Society & the California Dept. of Public Health's California Cancer Registry.
- Cancer Facts & Figures 2020 Special Section: Cancer in Adolescents and Young Adults. (2020). American Cancer Society.
- Cancer Statistics, 2020. CA: A Cancer Journal for Clinicians. Siegel, R. L., et al.
- Challenges Associated with Living Remotely from a Pediatric Cancer Center: A Qualitative Study. (2019). Journal of Oncology Practice. Walling, E. B., et al.
- Estimating the Proportion of Childhood Cancer Cases and Costs Attributable to the Environment in California. (2017). American Journal of Public Health. Nelson, L., et al.
- Factors Influencing Risk-Based Care of the Childhood Cancer Survivor in the 21st Century. (2018). CA: A Cancer Journal for Clinicians. Dixon, S. B., et al.
- Financial Hardship and the Economic Effect of Childhood Cancer Survivorship. (2018). Journal of Clinical Oncology. Nathan, P. C., et al.
- Geographic Variation in Pediatric Cancer Incidence — United States, 2003–2014. (2018). Morbidity and Mortality Weekly Report. Siegel, D. A., et al.
- Guiding Cancer Control: A Path to Transformation. (2019). National Academies of Sciences, Engineering, and Medicine.
- Life Expectancy of Adult Survivors of Childhood Cancer Over 3 Decades. (2020). JAMA Oncology. Yeh, J. M., et al.
- The Affordable Care Act and Cancer. (2019). American Society of Clinical Oncology.
- More Data Sources For Cancer
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- California Cancer Registry. California Dept. of Public Health.
- Cancer Data and Statistics Tools. Centers for Disease Control and Prevention.
- Cancer Statistics Center: Childhood and Adolescent Cancer. American Cancer Society.
- Health, United States, 2018 – Data Finder. National Center for Health Statistics.
- State Cancer Profiles. National Cancer Institute.
- United States Cancer Statistics: Data Visualizations. U.S. Cancer Statistics Working Group.
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