QOL-38. PSYCHOSOCIAL OUTCOMES OF CHILDREN WITH DIFFUSE INTRINSIC PONTINE GLIOMA (DIPG) AND HIGH-GRADE GLIOMA (HGG) –PROSPECTIVE, LONGITUDINAL PROMIS ASSESSMENTS OF PATIENTS ENROLLED ON CONNECT PHASE I CLINICAL TRIALS

Abstract

Abstract INTRODUCTION Given poor prognoses, children with DIPG/HGG may experience psychosocial sequelae throughout their illness journey, negatively impacting quality of life (QOL). We prospectively assessed caregiver-proxy and patient-reported psychosocial outcomes of children with DIPG/HGG enrolled on two early-phase CONNECT trials. METHODS Patient-Reported Outcomes Measurement Information System (PROMIS) short forms were administered monthly to patients ≥8 years and caregivers of patients aged 5-17 years while enrolled on two phase I clinical trials for newly-diagnosed DIPG/HGG involving upfront radiotherapy (RT) and concurrent and/or adjuvant oral agents. T-scores (M=50, SD=10) were calculated relative to the general population for emotional distress (Anxiety and Depression) and relationship quality (Peer Relationships and Family Relationships). Linear mixed modeling compared scores at pre-RT, post-RT, 1 month pre-progression, and end of therapy (EOT). Spearman’s correlations were calculated. RESULTS Twenty-eight patients (median age=10 years; DIPG [n=23]; HGG [n=17]) and 40 caregivers participated. Patient and caregiver-proxy reports demonstrated comparable levels of emotional distress and relationship quality to norms and were stable over time. The proportion of patients endorsing mild or greater impairment in emotional distress (T-score >55) was relatively comparable at pre-RT (Anxiety & Depression=26%), post-RT (Anxiety=36%, Depression=23%), and 1 month pre-progression (Anxiety=23%, Depression=36%), with more patients endorsing impairment (Anxiety=58%, Depression=67%) at EOT, often corresponding to disease progression; though differences were not statistically significant. Caregiver-proxy and patient-reported scores were similar across all timepoints and domains, with a pattern of higher caregiver-reported versus patient-reported emotional distress (Spearman’s Rho range: 0.62-0.67;p<0.0001). CONCLUSIONS Children with DIPG/HGG and their caregivers reported comparable emotional functioning and relationship quality to the general population. Caregivers slightly overestimated psychological distress compared to youth self-reports. Findings may reflect resilience of this population when faced with adversity, while highlighting benefit of psychosocial supports and low therapy toxicity on QOL. Future analyses will compare psychosocial, physical, and functional symptoms.