Childhood, adolescent, and young adult (AYA) cancers represent a unique and challenging group of diseases that affect individuals during critical stages of growth and development.
Unlike adult cancers, which are often linked to lifestyle or environmental factors, these cancers typically arise from genetic or developmental causes, making them distinct in biology and treatment needs. Advances in research and therapy have significantly improved survival rates, yet many young patients face lifelong physical, emotional, and social effects from their diagnosis and treatment.
Understanding the specific challenges of cancer across these age groups is essential to improving care, outcomes, and quality of life for young survivors and their families. Survivors often face barriers to long-term care, fertility preservation, education reintegration, and mental health support challenges that can persist for years after treatment ends. Improving the continuum of care for this population is essential to advancing health for everyone, supporting families, and ensuring quality of life for Utah’s youngest cancer survivors.
Although these cancers represent a small portion of total cancer cases, they have a disproportionate emotional, financial, and social impact on families and communities.
| Rate Type | Utah (per 100,000) | US (per 100,000) | Status | Source |
| Incidence <15 years | 18.2 | 16.6 | Rising | SEER 2018-2022 |
| Incidence <20 years | 18.2 | 18.4 | Rising | IBIS 2022 |
In 2022, 139 children aged 0-14, 105 adolescents aged 15-19, and 1,303 young adults aged 20-39 were diagnosed with cancer or benign brain/central nervous system (CNS) tumors in Utah. (Utah Cancer Registry)
Different age groups are impacted by different types of cancer at different rates. Brain tumors are most commonly diagnosed cancer in children and adolescents, while melanoma is the most commonly diagnosed cancer in young adults.
Data from the Utah Cancer Registry:
- Limited public and provider awareness of early warning signs of childhood, adolescent and young adult cancers.
- Gaps in access to specialized oncology care, particularly in rural and underserved regions.
- Fragmented coordination between pediatric and adult treatment systems.
- Financial hardship and employment strain on caregivers and families.
- Insufficient access to fertility preservation.
- Insufficient access to psychosocial support services.
- Increased risk for secondary cancers and long-term treatment-related health effect.
- Transportation barriers for care during or follow up appointments.
- Lack of local services for rural families.
Promote
- Educate patients, caregivers, and providers on life after treatment, ongoing screening, and secondary cancer risks.
- Share caregiver resources on navigating the Family Medical Leave Act and understanding employment protections.
- Increase awareness of fertility preservation, trauma-informed care, and mental health support programs for families.
- Food security programs for patient families through health care facilities.
- Highlight bereavement care, pro bono therapy, fertility preservation, and end-of-life support for families.
Partner
- Provide 504 and Individualized Education Plan support for kids with medical needs to receive specialized support in the classroom.
- Provide counseling for parents on navigating medical bills, time off work, babysitters, etc.
- Education on life after cancer treatment and the importance of continued screening for all cancers.
- Insurance navigation support with preexisting conditions.
- Community organizations and non-profits to ensure that pediatric/AYA cancer patients and families have access to financial, emotional, and practical assistance.
- Train providers on survivorship care, secondary cancer risks, and long-term monitoring.
- Expand trauma-informed communication training for all clinical and nonclinical staff.
- Psychosocial support offered at health systems.
Policy
- Advance legislation for employer family leave benefits that protect the income and employment of parents or guardians caring for children with critical illness.
- Mandate insurance coverage for fertility preservation, survivorship care, and mental health counseling within both public and private plans.
- Expand eligibility for WIC (Women, Infants, and Children) and CHIP (Children’s Health Insurance Program) to include families experiencing financial hardship due to childhood or AYA cancer.
- Encourage hospitals and treatment centers to integrate food security programs, such as meal vouchers or on-site pantries, to reduce financial stress and improve family well-being.
- Embed trauma-informed care standards into state healthcare policy to ensure both clinical and nonclinical professionals are trained to deliver equitable, compassionate care.