- Characteristics of Children with Special Needs
- Children with Special Health Care Needs
- Prevalence of Special Education Disabilities Among Students, by Disability Type
- 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
- Student Demographics
- Access to Services for Children with Special Needs
- Health Insurance Coverage for Children with Special Health Care Needs
- Impacts of Special Health Care Needs on Children and Families
- 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)
- 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)
- Quality of Care for Children with Special Health Care Needs
- 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)
- Health Care
- Health Insurance Coverage, by Type and Age Group
- Health Insurance Coverage Status, by Race/Ethnicity
- Medicaid (Medi-Cal) or Children's Health Insurance Program (CHIP) Coverage
- Medicaid (Medi-Cal) or CHIP Coverage, by Age Group (California & U.S. Only)
- Medicaid (Medi-Cal) and CHIP Yearly Enrollment (California & U.S. Only)
- Uninsured at Any Point in Past Year
- Medical Care Delayed or Forgone in Past Year
- Length of Time Since Teen's Last Check-Up
- Usual Source of Health Care
- Receipt of Care Within a Medical Home
- School Health Centers
- School Provides Adequate Health Services (Staff Reported)
- Hospital Use
- Why This Topic Is Important
Advances in the treatment of childhood cancer have led to remarkable improvements in recent decades, with five- and ten-year survival rates in the U.S. now exceeding 80% (1, 2). At the same time, rates of new childhood cancer continue to increase slightly, and disparities in survival rates persist (1, 3). Among U.S. children ages 0-19, cancer incidence and mortality in 2021 have been estimated at more than 15,500 diagnoses and more than 1,700 deaths (1). After accidents, suicide, and homicide, cancer is the leading cause of death among young people ages 1-19 nationwide (4).
Cancer outcomes vary based on type of cancer, age at diagnosis, socioeconomic status, race/ethnicity, and other factors (1, 3). Children treated by specialists at pediatric cancer centers are most likely to have positive outcomes, although some families have difficulty accessing appropriate care due to geographic distance, financial challenges, and other barriers (3, 5). It also is critical that children and families receive comprehensive, multidisciplinary care (including psychosocial services) to meet their specific needs (3, 5).
Nationwide, the number of survivors of childhood cancer was estimated to reach 500,000 by 2020 (2). This growing, vulnerable population continues to need specialized, comprehensive health care, as they may experience late effects of their disease and its treatment, and they face higher risks of other chronic health conditions and premature death (2). In addition to the substantial burden of disease, survivors of childhood cancer also face greater risks of psychological problems, financial and employment difficulties, low educational attainment, limited health insurance, and other quality of life issues throughout adulthood (2).For more information, see kidsdata.org’s Research & Links section.
Sources for this narrative:
1. Siegel, R. L., et al. (2021). Cancer statistics, 2021. CA: A Cancer Journal for Clinicians, 71(1), 7-33. Retrieved from: https://acsjournals.onlinelibrary.wiley.com/doi/full/10.3322/caac.21654
2. Dixon, S. B., et al. (2018). Factors influencing risk-based care of the childhood cancer survivor in the 21st century. CA: A Cancer Journal for Clinicians, 68(2), 133-152. Retrieved from: https://acsjournals.onlinelibrary.wiley.com/doi/10.3322/caac.21445
3. American Cancer Society. (2020). Cancer facts and figures 2020. Retrieved from: https://www.cancer.org/research/cancer-facts-statistics/all-cancer-facts-figures/cancer-facts-figures-2020.html
4. National Center for Injury Prevention and Control. (2021). Leading causes of death reports, 1981-2019. Centers for Disease Control and Prevention. Retrieved from: https://webappa.cdc.gov/sasweb/ncipc/leadcause.html
5. American Academy of Pediatrics, Section on Hematology/Oncology. (2018). Standards for pediatric cancer centers. Pediatrics, 134(2), 410-414. Retrieved from: https://pediatrics.aappublications.org/content/134/2/410
- How Children Are Faring
Between 2012 and 2016, 9,296 new cancer diagnoses were recorded among California children ages 0-19. The state's diagnosis rate increased from 16.5 per 100,000 children in 2000-2004 to 18.2 per 100,000 in 2012-2016, mirroring national trends. At the county level, new childhood cancer rates ranged from fewer than 15 diagnoses per 100,000 to more than 25 per 100,000 across regions with data in 2012-2016. Statewide, adolescents ages 15-19 generally have higher rates of new cancer diagnosis than children ages 0-14. White children also tend to have the highest rate of cancer diagnosis among racial/ethnic groups with data.
Leukemias, lymphomas, and central nervous system cancers consistently are the most common types of cancer diagnosis among children in California, with five-year survival rates ranging from 71% to 94% for 2006-2016 diagnoses. Across all types of childhood cancer, five-year survival rates ranged from 70% (soft tissue sarcomas) to 97% (retinoblastomas) for 2006-2016 diagnoses, with an overall survival rate for all cancers at 83%. Racial/ethnic disparities persist in childhood cancer survival rates, with white children having higher probabilities of surviving for at least five years after diagnosis compared with children in other groups.
- Policy Implications
Public policy plays a role in maximizing cancer prevention efforts and in promoting positive health outcomes and quality of life for children with cancer, survivors of cancer, and their families. Recent federal policies have made progress in several ways, e.g., the Affordable Care Act established no lifetime caps on care and no denials based on pre-existing conditions, among other changes, and the Childhood Cancer Survivorship, Treatment, Access, and Research (STAR) Act aims to improve care for survivors of childhood cancer and advance the development and availability of cancer treatments; still, there are a number of areas where policy changes can advance further improvements (1, 2, 3). Policies can promote equitable, appropriate, and affordable access to preventive care, screening, diagnosis, and therapies, as well as continued research to enhance prevention and treatment (2, 3). Additionally, public policy can help ensure that survivors of childhood cancer have equitable access to high-quality care for the late effects of their disease and its treatment, and for other chronic physical and mental health conditions common among this population (2, 4, 5).
Policy and practice options include:
For more information, see kidsdata.org’s Research & Links section or Policy Implications under Access to Services for Children with Special Needs and Health Care.
- Ensuring that all pediatric cancer patients and survivors, regardless of race/ethnicity, family income, or geographic location, 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 must navigate an array of services and systems (2, 6, 7)
- Supporting pediatric centers of excellence in which well-trained, multidisciplinary teams of professionals, led by pediatric specialists, collaborate to improve care; also, ensuring that adequate reimbursement is provided for specialized services (7, 8)
- Promoting strong government action and coordination across stakeholders to achieve solutions for the ongoing shortage of affordable drugs to treat pediatric cancer, and continuing to encourage and incentivize pharmaceutical companies to focus on the development and availability of cancer treatments for children, despite the smaller market they represent (3, 9)
- Improving quality of life services for patients and their families facing 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; for those facing terminal cancer, especially, psychosocial and other support services are an essential part of high-quality, team-based care (2, 5, 6, 7)
- Ensuring access to comprehensive palliative care and hospice services when a cure is not possible (2, 5)
- Working toward a unified, efficient, value-based payment system for children with medical complexity, including those with cancer, thereby reducing delayed or denied services for children and financial hardship for families (6, 7)
- Promoting coordination across sectors (research, policy, practice, etc.) to develop effective models and methods for providing survivors of childhood cancer with comprehensive, patient-specific, risk-based care, taking into account the need to support caregivers, control costs, and minimize the effects of provider shortages (2, 4)
- Ensuring childhood cancer survivors have access to the wide variety of services—medical, mental health, education, employment, etc.—necessary for their successful transition to adulthood and adult care (4, 7)
- Supporting continued policy efforts and research to promote a comprehensive approach to cancer control and advances in understanding pediatric cancer, including risk factors, prevention measures, treatments, and ways to reduce long-term and late effects in survivors (3, 4)
Sources for this narrative:
1. American Society of Clinical Oncology. (2019). The Affordable Care Act and cancer. Retrieved from: https://www.cancer.net/navigating-cancer-care/financial-considerations/affordable-care-act-and-cancer
2. Alfano, C. M., et al. (2019). Equitably improving outcomes for cancer survivors and supporting caregivers: A blueprint for care delivery, research, education, and policy. CA: A Cancer Journal for Clinicians, 69(1), 35-49. Retrieved from: https://acsjournals.onlinelibrary.wiley.com/doi/10.3322/caac.21548
3. Jiles, C., & Wu, E. (2018). Pediatric cancer treatment development. In M. Buck & K. Manasco (Eds.), Pediatric self-assessment program (PedSAP) 2018 book 1: Pediatric oncology (pp. 7-25). Retrieved from: https://www.accp.com/docs/bookstore/pedsap/ped2018b1_sample.pdf
4. Dixon, S. B., et al. (2018). Factors influencing risk-based care of the childhood cancer survivor in the 21st century. CA: A Cancer Journal for Clinicians, 68(2), 133-152. Retrieved from: https://acsjournals.onlinelibrary.wiley.com/doi/10.3322/caac.21445
5. Kirch, R., et al. (2016). Advancing a comprehensive cancer care agenda for children and their families: Institute of Medicine workshop highlights and next steps. CA: A Cancer Journal for Clinicians, 66(5), 398-407. Retrieved from: https://acsjournals.onlinelibrary.wiley.com/doi/10.3322/caac.21347
6. American Academy of Pediatrics, Council on Children with Disabilities & Medical Home Implementation Project Advisory Committee. (2018). Patient- and family-centered care coordination: A framework for integrating care for children and youth across multiple systems. Pediatrics, 133(5), e1451-e1460. Retrieved from: https://pediatrics.aappublications.org/content/133/5/e1451
7. Agrawal, R., & Stille, C. (Eds.). (2018). Building systems that work for children with complex health care needs. Pediatrics, 141(Suppl. 3). Retrieved from: https://pediatrics.aappublications.org/content/141/Supplement_3
8. American Academy of Pediatrics, Section on Hematology/Oncology. (2018). Standards for pediatric cancer centers. Pediatrics, 134(2), 410-414. Retrieved from: https://pediatrics.aappublications.org/content/134/2/410
9. Unguru, Y., et al. (2019). Chemotherapy and supportive care agents as essential medicines for children with cancer. JAMA Pediatrics, 173(5), 477-484. Retrieved from: https://jamanetwork.com/journals/jamapediatrics/article-abstract/2725862
- Websites with Related Information
- American Cancer Society: Cancer in Children
- American Childhood Cancer Organization
- California Cancer Action Center. American Cancer Society Cancer Action Network.
- Children’s Oncology Group
- Comprehensive Cancer Control Program. California Dept. of Public Health.
- CureSearch for Children’s Cancer
- Lucile Packard Children’s Hospital Stanford: Pediatric Cancer
- National Cancer Institute: Childhood Cancers
- OncoLink. Penn Medicine.
- Key Reports and Research
- 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 and Figures 2017. (2017). American Cancer Society & California Cancer Registry.
- Cancer Facts and Figures 2020: Cancer in Adolescents and Young Adults. (2020). American Cancer Society.
- Cancer Statistics, 2021. (2021). 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 Press. National Academies of Sciences, Engineering, and Medicine.
- Life Expectancy of Adult Survivors of Childhood Cancer Over Three 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
- California Cancer Registry: CAL*Explorer
- Cancer Data and Statistics Tools. Centers for Disease Control and Prevention.
- Cancer Statistics Center: Childhood and Adolescent Cancer. American Cancer Society.
- Health, United States, 2019 – 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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