Advancing Research for Adolescents and Young Adults Cancer: A Position Statement

Existing Standards and Guidelines

Despite a relatively strong body of literature on the standard of clinical care and practices for AYA cancer patients/survivors,^4–7 to our knowledge, there exist few guidelines for conducting research specifically targeting AYA cancer. For example, the Standards for the Psychosocial Care of Children with Cancer and Their Families, ⁸ endorsed by numerous pediatric and AYA professional organizations, includes limited reference to the expectations and standards of research in AYA oncology. The Canadian Framework for the Care and Support of AYAs with Cancer ⁹ has a strong emphasis on research and highlighted that AYA cancer patients/survivors remain an under-studied group with insufficient clinical trial participation for both therapeutic and supportive care trials. However, most existing guidelines lack a set of criteria or procedures to guide the development and implementation of research in the field of AYA oncology.

The Children’s Oncology Group (COG) is among the most active national cooperative groups in the United States to advance/promote research in AYA oncology. Following the COG 2013 blueprint for AYA oncology research, COG initiated the AYA responsible investigator (RI) network to address site-level factors impacting clinical trial enrollment of AYAs with cancer. ¹⁰ COG’s AYA RI Network effort identified important site-level barriers to AYA oncology research and a new model to potentially address these factors. ¹⁰ Despite limited resources and information in existing guidelines for research in AYA oncology, it is widely acknowledged that rigorous research is essential to advancing and delivering quality care to AYAs with cancer.

Identified Barriers to AYA Oncology Research

In addition to the site-level factors impacting clinical trial enrollment of AYA cancer patients/survivors identified by COG, the literature has suggested other important facilitators and barriers (Table 1). First, existing national cooperative groups still have differential priorities in pediatric versus adult oncology, resulting in a lack of “true” AYA-focused research that includes the entire population of 15–39-year-old individuals with cancer and a unified research priority.^11,12 Second, there is a lack of consensus on the definition of the AYA-cancer survivor population, i.e., if the AYA population refers to cancer survivors currently 15–39 years old versus those diagnosed with cancer from 15 to 39 years old (but may now be survivors in later adulthood). ¹³ Finally, there lack AYA-focused funding opportunities, often being absorbed into pediatric cancer or other topic- but not population-specific mechanisms.

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Table 1.

Barriers, Suggested Actions, and Resources for AYA Research

Barriers	Suggested action	Resources
The difference in priority between pediatric and medical oncology	Facilitative conversations for collaboration between professional societies	COG: https://www.childrensoncologygroup.org/NCCN:https://www.nccn.org/
A lack of consensus on the definition of the AYA-cancer survivor population	National and international discussions on a unified definition of AYA cancer survivors	JAYAO editors’ definitionhttps://doi.org/10.1089/jayao.2011.150 JAMA Oncology Patient Page https://doi.org/10.1001/jamaoncol.2022.6132
Lack of AYA-focused funding mechanisms	Advocating at the national and international level, and unifying resources in both pediatric and medical oncology	NCI Office of Cancer Survivorship https://cancercontrol.cancer.gov/ocs/special-focus-areas/pediatric-adolescent-and-young-adult-survivorship
A lack of resources for community-based cancers to engage in AYA cancer research	Stimulate collaboration between community cancer centers and NCI-designated and/or academic cancer centers	NCORP https://ncorp.cancer.gov/

Suggested Strategies to Promote AYA Oncology Research

Understanding individual institutions have unique circumstances, challenges, and opportunities in conducting AYA oncology research, it is critically important for any program (new or established) to collaborate across sectors to complement their institutional characteristics with the following principles. First, engaging in different types of research to maximize institutional strengths. For example, larger comprehensive cancer centers could be well-positioned to both enroll patients on large-scale clinical trials via national cooperative groups and develop institutional or multi-site pilot studies to support future clinical trial development, whereas smaller community-based centers can be critical settings to enable accrual of patients onto cooperative group trials as well as provide a setting for ascertainment of pragmatic or real-world clinical trial data. ¹⁴ Second, actively engaging an adult-treating oncologist to leverage resources from both pediatric and medical oncology. ¹⁵ Both the National Comprehensive Cancer Network (NCCN) and COG have a specialized group focusing on AYA cancer; there seemed to be limited formal communications between the two groups to further catalyze AYA cancer research. Increasing the awareness and conversation between pediatric and medical oncologists serving the AYA population could be a potentially effective ground-up approach to strengthen research. Third, there exists significant potentials to explore collaborations with NPO/NGOs serving AYAs with cancer to engage AYA cancer patients/survivors beyond those who receive regular care through cancer centers. ¹⁶ Finally, individual cancer centers, regardless of their size, may consider smaller multicenter collaborations between programs that have previous collaborative efforts that are outside large national cooperative groups.

Helpful Resources

National cooperative groups have provided helpful infrastructures for cancer centers, and larger institutions are encouraged to connect smaller organizations with cooperative groups in conducting AYA oncology research (Table 1). Professional societies have their respective toolboxes to guide research, especially clinical trials, that may be utilized for AYA-focused opportunities, such as NCCN, COG, or the National Cancer Institute Community Oncology Research Program. Finally, there are also international groups advocating for international AYA oncology research, which have potentials for promoting AYA oncology research both nationally and internationally.

Summary and Call to Action

While there remain known challenges in existing infrastructures supporting AYA-focused research, it is important to transition from individualized efforts that to focus on harmonizing efforts of researchers in AYA oncology in order to build opportunities at a cooperative group or national level across institutions. We also call for more coordinated efforts at the National Institute of Health, especially NCI, NIMH, and NIAID, to design and facilitate AYA-focused research infrastructure. Especially for psychosocial research, multi-institutional trials (outside national cooperative groups) may facilitate AYA-focused research efforts. In summary, research has been consistently identified as a critical component to advance AYA oncology care, and AYA oncology program and centers are encouraged to utilize the resources and suggestions provided by this position article.