Abstract
Navigating cancer treatment is difficult for individuals of all ages but can be especially challenging for adolescents and young adults (AYA) who are caught between the distinct pediatric and adult populations. 1 With fewer routine screenings, limited participation in clinical trials, and psychosocial issues unique to their age, it is well-known that AYA face poorer outcomes. 2 Enhancing care for AYA with cancer requires collaboration and advocacy across medical and psychosocial disciplines from pediatric and adult oncology backgrounds. While AYA may be treated in pediatric or adult facilities, those enrolled in AYA-specific cancer programs are more likely to receive care that follows recommendations from psychosocial and clinical guidelines. 3 Many institutions do not have AYA cancer programs, so it is important to identify health care champions in both pediatric and adult institutions who can assess AYA-specific needs and provide developmentally informed care.
Despite many advances in AYA oncology in recent years, 2 AYA care is often fragmented across settings, and resources are not centrally located. A lack of coordinated care places an additional burden on health care professionals or AYA themselves to search for, interpret, assemble, and digest information from varying sources. In November 2022, a Think Tank was held in Memphis, Tennessee at St. Jude Children’s Research Hospital to discuss this issue in AYA oncology. The purpose of this Think Tank was to assemble a group of medical and psychosocial professionals dedicated to improving patient care experiences, treatment outcomes, and research opportunities for AYA cancer patients. Forty-seven clinical practitioners and academicians from medical and psychosocial backgrounds in pediatric and adult oncology across the United States participated.
Meeting Objectives
This multidisciplinary meeting took place over a two-day period. On the first day, all attendees were encouraged to network with one another via structured discussion groups to learn about similarities and differences in AYA care across institutions. A panel discussion by AYA survivors and patient advisors highlighted the important work of involving stakeholders in treatment and practice. In this panel, AYA advisors shared their challenges in accessing and utilizing recommended resources throughout their treatment trajectory. Many AYA also shared a sentiment that resources were created for them, but without them. Awareness of this issue encouraged attendees to be thoughtful about how to involve AYA in guideline/resource development from its inception.
On day two, attendees were organized into groups highlighting key domains of AYA oncology care: screening and assessment; awareness and education; treatment adherence and self-management; research; survivorship; psychosocial care; onco-fertility and sexual health; palliative care and end-of-life; and health disparities and special considerations for marginalized populations. Each multidisciplinary group identified and discussed barriers to care related to their domain and identified possible solutions for overcoming challenges. Later in the day, groups were encouraged to identify a search strategy to identify all relevant guidelines related to their domain.
Following the meeting, groups began a collaborative and formalized review of current clinical and psychosocial guidelines and other evidence related to their topic. Special attention was given to an assembly of readily available resources that can support the AYA community. Each group then produced a perspective essay summarizing their findings, documenting key barriers, and highlighting available resources and suggested actions for improvement.
Looking Ahead
While many formal guidelines in AYA cancer care exist, there are limitations in how they have been disseminated. 4 Therefore, the goal of this collection is to meet a need to increase access to information that will help AYA thrive in any setting and community. In addition to reviewing available guidelines, these articles highlight the barriers faced and offer direct and specific strategies for improving AYA well-being across several domains of care. The tables included in each essay serve as a tool for health care professionals, caregivers, and AYA themselves to utilize as they seek high-quality and comprehensive cancer care. By centralizing this information, we hope to broaden support to all AYA treated for cancer.
Footnotes
Author Disclosure Statement
No competing financial interests exist.
Funding Information
This project was supported by Faculty Affairs and the Department of Psychosocial Services at St. Jude Children’s Research Hospital (SJCRH). Support to SJCRH is provided by the American Lebanese Syrian Associated Charities (ALSAC).