Unique Challenges in Sarcoma Care for Adolescents and Young Adults

This article examines persistent care gaps facing adolescents and young adults (AYAs) with sarcoma, focusing on clinical trial access, germline predisposition, and palliative care. Despite overall progress in oncology, AYAs continue to experience lower clinical trial enrollment—the AYA gap—particularly in rare cancers such as sarcoma, which spans pediatric and medical oncology. The creation of the National Cancer Institute's (NCI) National Clinical Trials Network (NCTN) fostered cross-group collaboration, broadened age eligibility, and streamlined trial activation. Early collaborative sarcoma trials highlighted both the promise and structural challenges of this model, and ongoing reforms aim to improve access, especially in community settings. This article also positions sarcoma as a high-yield context for germline cancer predisposition testing. Contemporary sequencing studies show that 10%-20% or more of patients with sarcoma harbor pathogenic germline variants, often undetected by family history–based criteria. This supports a shift from syndrome-driven to tumor-informed genetic evaluation, particularly for AYAs who frequently fall between pediatric and adult testing frameworks. Finally, the importance of early, age-appropriate palliative care is highlighted. AYAs with sarcoma face substantial symptom burden, functional impairment, prognostic uncertainty, and psychosocial distress. Evidence suggests that integrated palliative care improves quality of life, communication, and potentially survival, yet referrals are often delayed. Together, these topics highlight the need for coordinated, developmentally informed, and biologically integrated approaches to optimize outcomes for AYAs with sarcoma.