Pediatric and Adolescent and Young Adult (AYA) Cancer Survivorship

Office of Cancer Survivorship Director Dr. Emily Tonorezos represents NCI at the Congressional Childhood Cancer Caucus Summit, September 2022.

It is estimated that each year, over 10,000 children (ages 0 to 14 years) and over 85,000 adolescents and young adults (AYA – ages 15 to 39) will be diagnosed with cancer in the United States. Major advances in treatment and supportive care in recent decades have contributed to a growing population of childhood and AYA cancer survivors, among whom over 60% will suffer adverse physical, psychosocial, or behavioral outcomes months or even years after completion of treatment.

These adverse outcomes associated with cancer and its treatment can substantially impact the quality of life of individuals diagnosed with childhood and AYA cancers, even as they grow into adulthood. Common adverse outcomes include prature/accelerated aging, cardiotoxicity, endocrine dysfunction, reproductive health issues, secondary cancers, financial toxicity, neurocognitive deficits, and psychosocial concerns. There are also many barriers to long-term follow-up care, especially as survivors transition from pediatric to adult healthcare delivery settings.

The Division of Cancer Control and Population Sciences (DCCPS) of the National Cancer Institute (NCI) is supporting research focused on this growing population of pediatric and AYA cancer survivors. This work is expected to improve our understanding of the unique experiences and unmet needs of the population, as well as identify and evaluate strategies to improve care delivery and outcomes.

Described below are milestones, initiatives, and resources in this important area of research.

The Childhood Cancer Survivorship, Treatment, Access, and Research (STAR) Act of 2018

In 2018, the United States Congress passed the Childhood Cancer Survivorship, Treatment, Access, and Research (STAR) Act, with the support of many childhood cancer organizations, to advance childhood and AYA cancer research and treatments, improve cancer surveillance, and enhance resources for survivors and their families. In addition to authorizing enhancements to CDC registry infrastructure and an expansion of existing NCI-supported biospecimen collection and associated infrastructure, the STAR Act authorized NCI to improve the care and quality of life for childhood and AYA cancer survivors by continuing to conduct and support childhood and AYA cancer survivorship research, with an emphasis on six key areas: (1) disparities in survivor outcomes; (2) barriers to follow-up care (e.g. access, adherence); (3) impact of familial, socioeconomic, and other environmental factors on survivor outcomes; (4) indicators for long-term follow-up needs related to risk for late effects, recurrence, and subsequent cancers; (5) risk factors and predictors of late/long-term effects of cancer treatment; and (6) development of targeted interventions to reduce the burden of cancer for pediatric/AYA survivors.

NCI issued two funding opportunities as part of the institute’s implementation of the Childhood Cancer STAR Act:

  • RFA-CA-19-033, Improving Outcomes for Pediatric, Adolescent and Young Adult Cancer Survivors, with the goal of stimulating the scientific development of effective, feasible, and scalable interventions to address adverse physical and psychosocial effects in survivors of pediatric and/or adolescent/young adult (AYA) cancers; and
  • RFA-CA-20-027/RFA-CA-20-028, Research to Reduce Morbidity and Improve Care for Pediatric, and Adolescent and Young Adult (AYA) Cancer Survivors, which aimed to support observational, mechanistic, and interventional research that addresses the six key STAR Act domains

While the information below includes some additional STAR-related efforts, you can read more about the full scope of NCI initiatives stimulated by the STAR Act here.

Disparities and Barriers to Pediatric Survivorship Care

There have been innumerable advances in interventions to support childhood cancer survivors, but not all children have benefitted from these advances to the same extent. Differences in the access to and delivery of survivorship care, healthcare utilization, and health outcomes have been observed based on factors such as race/ethnicity, insurance status, rural place of residency, and biological sex. Below­­­­­­­ are several efforts to further understand and address these disparities.

Navigating Pediatric to Adult Care for Cancer Survivors

Children and adolescents with chronic conditions face increased health risks that require complex multidisciplinary care. As children transition from pediatric to adult healthcare services, however, there are several barriers that lead to issues accessing and engaging age-appropriate care, managing developmental needs, and supporting optimal health. This is increasingly evident for child and adolescent cancer survivors, who are at increased risk for late and long-term physical and psychosocial effects of cancer and its treatment, as well as subsequent malignancies and additional comorbid conditions. Described below are examples of recent efforts to understand and improve the transition for cancer survivors from pediatric to adult healthcare services, including the strengthening of coordination to manage the complexities of cancer survivorship care.

Related Resources

Childhood Cancer Survivor Study: An Overview

Ohlsen TJD, Chen Y, Baldwin LM, et al. Primary Care Utilization and Cardiovascular Screening in Adult Survivors of Childhood Cancer. JAMA Netw Open. 2023 Dec 1;6(12):e2347449. doi:10.1001/jamanetworkopen.2023.47449.

NCI Cancer Currents blog: Study Offers Insights on Health Problems among AYA Cancer Survivors

NCI Cancer Currents blog: New Task Force Focuses on Quality of Life for AYAs with Cancer

OCS Director’s Series, in partnership with the Eunice Kennedy Shriver National Institute of Child Health and Human Development: Fertility Preservation in Cancer Survivors

Currently Funded Grants

View the DCCPS survivorship portfolio of currently funded grants.


For information about the NCI Office of Cancer Survivorship (OCS) or news in the field, go to the OCS homepage, or find us on X @NCICancerSurv.

Last Updated
December 21, 2023