QLIF-17. THE IMPORTANCE OF THE CERN FOUNDATION ADULT EPENDYMOMA OUTCOMES PROJECT

Abstract

Outcomes projects can be a catalyst in determining disease and treatment- related consequences for patients with rare tumors and in identifying ways to educate patients and providers. The Adult Ependymoma Outcomes (AEO) survey uses self-reported experiences to evaluate how this tumor impacts patients throughout their illness. Patients completed the AEO survey via web-based portal. The survey includes questions on treatment, tumor recurrence, current health status, the MD Anderson Symptom Inventory-Brain and Spine Module and the MOS 36-Item Short Form Health Survey. The sample included 264 participants (female=54%), with a median age of 46 (18-77), who were married (65%) with at least a college education (37%). Radiation treatment was more commonly used in patients with brain involvement (X2 (1) =20.7, p<0.001), who underwent a partial resection (21%, X2 (3) =15.4, p<0.001), or with a grade 3 tumor (13%, X2 (2) =18.8, p<0.001). Recurrence occurred in a small group (29%), with Grade 1 tumor patients 2.6 times and Grade 3 tumor patients 2.5 times more likely to have recurrence compared to those with Grade 2 tumors. Spine tumor patients had a higher symptom burden (mean=2.8; scale 0 to 10) than brain tumor patients (mean=1.9, t (247) =-4.0) and reported more moderate to severe symptoms (rating ≥ 5) (29%) compared to their counterparts (18%). Within physical health of the SF-36, spine patients reported worse health in bodily pain (mean=49.1, v mean=72.1, t (249) =6.8 p<0.001), physical functioning (mean=51.6, v mean=67.8, t (252) =4.1, p<0.001), and vitality (mean=40.9, v mean=50.1, t (202.2) =3.0, p<0.003). These results demonstrate the feasibility in implementing outcome projects that report on the clinical and demographic characteristics of a rare patient population and underscore the importance of outcomes data in understanding disease-related issues. This also supports future studies focusing on specific areas that can potentially improve aspects patient care and overall well-being.