To foster a better understanding of the current state of the science around cancer survivorship and assess evidence gaps and future research needs on pediatric and adolescent and young adult survivorship care, the National Cancer Institute (NCI) commissioned evidence reports from the AHRQ Evidence-based Practice Center (EPC) Program.
Cancer is the leading cause of disease-related death past infancy among children in the United States, but more children are surviving cancer. In 2021, 10,500 new cases of cancer were expected to be diagnosed among children ages 0 to 14 years and 88,260 among adolescent and young adults (AYAs) between ages 15 and 39. Although survival rates vary depending on the type of cancer and other factors (e.g., age at diagnosis, race, socioeconomic status), major treatment advances in recent decades have resulted in more than 80 percent of children with cancer surviving 5 years or more. The NCI Surveillance, Epidemiology, and End Results Program (SEER) estimates that there are more than 700,000 cancer survivors between the ages 0 and 39 in the United States.
Studies suggest that more than 60 percent of these survivors will suffer adverse physical, psychosocial, or behavioral outcomes months or years after they complete treatment. These disease- and treatment-related adverse outcomes can significantly impair the quality of survival. The development of effective strategies to prevent, detect, mitigate, and manage these adverse effects is therefore of high priority.
Adverse outcomes can vary in type (physical, behavioral, or psychosocial health effects) and severity (reduced quality of life or lifespan) and include premature/accelerated aging, cardiotoxicity, endocrine dysfunction, reproductive health issues, secondary cancers, financial toxicity, neurocognitive deficits, and other psychosocial issues. Congress passed The Childhood Cancer Survivorship, Treatment, Access, and Research (STAR) Act in May 2018, authorizing NCI to improve the care and quality of life of cancer survivors (including children and AYAs).
The topics covered by the EPC Program projects include—