Adolescents and Young Adults (AYAs)
AYAs, defined by the National Cancer Institute (NCI) as ages 15-39 years, are a vulnerable group in cancer care due to biologic and genetic differences, as well as risk factors that uniquely impact health and QOL outcomes, including concerns related to clinical trial access and enrollment, reproductive and sexual health, socioeconomic hardship, and mental health/psychosocial functioning.17 Through BSC liaison work with COG’s AYA Committee, cross-network collaboration with AYA investigators in medical oncology, and involvement in specific task forces, the BSC is poised to help address gaps in supportive care AYA research.
Given BSC expertise in QOL and patient-reported outcome (PRO) measurement, the BSC liaison was invited to join the National Clinical Trials Network (NCTN) AYA PRO Task Force formed in 2020. This task force yielded an AYA PRO core battery to assess health-related QOL and study-specific symptom burden, with recommended time points from study entry into survivorship.18 Inclusion and evaluation of the implementation of this battery in AYA clinical trials is underway.
BSC members also have significant expertise in psychosocial development; thus, members are represented on the Sexual Health Task Force (SHTF) of COG’S AYA Committee. This task force aims to identify knowledge gaps and prioritize research questions to improve the quality of sexual health care for AYAs. The SHTF conducted a scoping review of sexual health among AYA cancer survivors that highlighted the post-treatment burden of sexual dysfunction and negative impact of cancer on romantic relationships and body image.19 The SHTF also conducted a COG-wide survey of pediatric oncologists and advanced practice providers that suggested a need for provider education on AYA sexual health assessment, management, and communication.20 Following the approach of the AYA PRO Task Force, the SHTF created a sexual health PRO battery with potential sexual health study endpoints for future inclusion in COG and cross-network trials. Future initiatives will focus on provider education and AYA patient-focused interventions to improve provider-patient sexual health communication and care.