QOL-12SELF- AND PROXY-REPORTED CLINICAL OUTCOMES ASSESSMENTS (COAS) IN A LARGE COHORT OF CHILDREN WITH EPENDYMOMA.

Abstract

BACKGROUND: There has been increasing emphasis on the evaluation of patient-reported outcomes (PROs) in children with brain tumors. These metrics are especially critical for children with ependymoma, who frequently have prolonged treatment courses and undergo recurring cycles of remission and progression that may lead to significant morbidity. However, very few studies have examined PROs or COAs in children with ependymoma. This study details the COA data derived from the Pediatric Ependymoma Outcomes (PEO) project within the CERN Foundation. METHODS: Data in the PEO study were collected via an online survey using self-report and parent-proxy measures in the PROMIS battery, specifically, the Physical Function-Upper Extremity, Physical Function-Mobility, Pain Interference, Fatigue, Anxiety, Depression, Anger, and Peer Relations scales. RESULTS: Twenty-seven parent-child dyads participated. Self-reporters were 59.3% male, 85.2% non-Hispanic white, and had a mean age of 11.7 years (range, 5-22). Parent-proxy reports were completed by more mothers (74.1%), who were well-educated (74% at least some college education). Of importance, mean scores for most scales were generally within normal limits, reflecting good overall functioning. Even so, approximately a third of self- and parent-reports (32% and 36%, respectively) described poor physical mobility (at least 1 SD below the mean). In addition, a third of parents (32%) perceived their children as having elevated levels of fatigue. Finally, although children generally indicated typical levels of anger, depression, or anxiety, nearly a third (32%) reported peer relations that were at least one SD below the mean. Associations between demographics, disease, and treatment variables will also be presented. CONCLUSIONS: Children with ependymoma and their parents reported average COA as a group across multiple scales, demonstrating general physical and psychosocial well-being. However, there is a sizable percentage of children who exhibit difficulties in physical and social adaptation following diagnosis.