QOLP-08. UNDERSTANDING THE EXPERIENCE OF YOUNG ADULTS (YAS) DIAGNOSED WITH AN EPENDYMOMA FROM THE ADULT EPENDYMOMA OUTCOMES PROJECT AND RARE CNS OUTCOMES AND RISK STUDY

Abstract

Research in young adult (YA) patients is novel, particularly in central nervous system tumors like ependymomas. Stagnant survival outcomes in YAs are concerning compared to improvements within pediatric and older adults. Additionally, uncertainty of the impact of treatment on psychosocial and behavioral outcomes during an essential developmental stage warrants attention. The purpose of this report is to explore ependymoma YA outcomes data to inform care. Adult ependymoma (n=191) patients participating in a web-based outcomes study completed clinical data and validated questionnaires (EQ-5D, MDASI-BT). YAs 18–39 (n= 58) were compared to older adults (OAs) >40 (n=133). Participants were predominantly female (68%), with tumor location in brain (29%) or spine (71%). The majority of YAs (67%) reported seeing a physician within 6 months from symptom onset, whereas OAs were more likely to delay for 7 months or longer. Headaches (brain tumor 70%) and numbness (spine tumor73%) were common presenting symptoms for both age groups. 76% of YAs were working before diagnosis, however 27% stopped work, 18% reduced hours, 7% switched jobs and 2% lost their job after diagnosis. At time of participation, most participants were not on active treatment (61%), but both YA and OA frequently endorsed use of pain medication (37%). Tumor recurrence was more common in YAs (30%) compared to OAs (19%). Common moderate to severe symptoms in YAs included distress (27%) and fatigue/sadness (18%) with brain tumors compared to fatigue (56%) and distress/disturbed sleep/drowsiness (36%) with spine tumors. Over a third of YAs reported some impact on general health (usual activities, pain/discomfort, and anxiety/depression). Despite stable disease, YAs with ependymoma experienced mood and lifestyle challenges and reported significant symptoms and use of pain medication. Further exploration is needed on the impact of cancer-related effects on YAs to gain insight on appropriate management and care.