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.
The Agency for Healthcare Research and Quality (AHRQ) technical brief Disparities and Barriers to Pediatric Cancer Care was commissioned by NCI to support the development of a research agenda aligned with the goals of the STAR Act. The March 2021 report examined observational and interventional research focused on disparities in survivorship care, healthcare utilization, and health outcomes. The brief noted a small number of studies that identified individual-level factors that may contribute to observed disparities in care and outcomes, including financial or employment status, language, literacy, and trust in providers. At the provider level, knowledge, or comfort in the ability to provide care, and the availability of non-medical resources (e.g., transportation) were the most studied factors. There were few studies focused on the health system and payer levels. Furthermore, very few studies were identified that examined the impact of strategies or interventions designed to address disparities in survivorship care.
An April 2021 webinar featuring OCS Director Dr. Emily Tonorezos described the findings of this report. View a recording of the Disparities and Barriers to Pediatric Cancer Care webinar.
NCI recognized the need for research to address the full spectrum of factors that may contribute to poor outcomes among childhood cancer survivors, given that community, health system, organizational, process of care, or policy-related barriers may contribute to disparities in survivorship outcomes for childhood cancer survivors, yet are poorly understood. In 2021, DCCPS released an announcement for the opportunity for supplemental funding for NCI-designated Cancer Centers to identify barriers to long-term follow-up for childhood cancer survivors. Cancer centers were encouraged to propose observational studies or pilot interventions focused on understanding and/or addressing disparities in outcomes related to organizational factors. Centers were encouraged to consider a range of data sources including cancer registries, medical records, healthcare claims, and/or surveys of survivors, caregivers, providers, and payors. Through this initiative, NCI funded seven supplement awards. Learn more about these NCI funded supplements.
In January 2022, NCI released NOT-CA-22-029, designed to highlight the institute’s interest in receiving applications to understand and address the full spectrum of factors that contribute to disparities in survivorship care, healthcare utilization, and health outcomes among childhood cancer survivors. Studies that focus on factors that extend beyond the individual (e.g., survivor, caregiver, clinician) to include an examination or intervention that involves healthcare teams, healthcare system, community, payer, and/or policy-level factors that contribute to disparities in health outcomes and result in inequitable survivorship care are strongly encouraged. This NOSI is active until October 2024.
NCI hosted an informational webinar regarding this NOSI. View a recording of the NOSI webinar.
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.
NCI has been a key collaborator in a trans-NIH initiative with the Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD), the Office of Behavioral and Social Sciences Research, and the NIH Helping to End Addiction Long TermSM (HEAL) Initiative. In September 2020, NIH sponsored a public workshop to bring together experts from various backgrounds and disciplines to explore research areas of high priority for youth regarding needed transition services/support as part of routine care.
Workshop Goals:
- Bring together researchers and clinicians representing a broad range of pediatric diseases and conditions to learn from each other and define the current state of healthcare transition (HCT) research
- Use this knowledge and experience from a broad range of conditions to
- Identify common themes and highlight shared research gaps and opportunities that can complement ongoing disease-specific work across NIH institutes, centers, and offices and collaborating organizations
- Further define the needs of youth with chronic physical/medical conditions or intellectual/ developmental disabilities in the context of healthcare transitions
View an executive summary and a recording of the Lost in Transition Workshop.
The 2020 workshop helped to identify research gaps and opportunities that could complement ongoing disease-specific work across NIH and collaborating organizations, and it further defined research needs of youth with chronic physical/medical conditions or intellectual/developmental disabilities as they transition from pediatric to adult healthcare. The findings were highlighted in a report published in the Journal of Pediatrics.
Following the workshop, multiple NIH institutes, including NCI, released NOT-HD-21-027 in June 2021 to encourage applications related to pediatric HCT for youth with chronic physical/medical conditions or intellectual/developmental disabilities. With this supported research, NCI seeks to advance our understanding of promising strategies designed to facilitate successful HCT from pediatric to adult care settings, as well as barriers and facilitators to these transitions. The ultimate goal is to improve care quality and patient and family outcomes during and after HCT. This NOSI is active until January 2024.
The February 2022 NCI-supported AHRQ evidence report, Models of Care That Include Primary Care for Adult Survivors of Childhood Cancer: A Realist Review, identified and analyzed models of survivorship care for adult survivors of childhood cancer that included primary care, and highlighted available tools, training, and other resources for adult survivors of childhood cancer. The report, part of NCI’s ongoing STAR Act implementation efforts, concluded that to enable models of high-quality care that include primary care for adult survivors of childhood cancer, there needs to be communication of knowledge to both survivors and primary care providers.
In May 2022, AHRQ also released Transitions of Care From Pediatric to Adult Services for Children With Special Healthcare Needs, another STAR Act-related effort supported by NCI. The goal of the review was to better understand the evidence base for care interventions, implementation strategies, and between-provider communication tools among children with special healthcare needs (CSHCN) transitioning from pediatric to adult medical care services. The authors concluded that significant barriers to successful transitions exist for that population and there is little rigorous evidence to inform care interventions and implementation strategies. This review highlighted the need for more rigorous studies across the diverse populations of CSHCN in order to provide clearer answers for CSHCN, their families, caregivers, providers, funders, and policymakers.
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
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.