Longitudinal Caregiver- and Patient-reported Health-related Outcomes of Pediatric Patients with High-grade Gliomas Enrolled on CONNECT1701 and CONNECT1702

Abstract

Children with HGG, including DIPG, experience psychosocial and physical sequelae, negatively impacting health-related quality of life (HRQoL). Limited data exists on psychosocial functioning in this population. We longitudinally assessed caregiver-proxy and patient-reported HRQoL and functional outcomes of children with HGG on early-phase trials involving upfront radiotherapy (RT) and oral agents. PROMIS short forms were administered to patients ≥8 years-old and caregivers of patients aged 5-17 years-old. T-scores (M=50, SD=10) were calculated relative to the general population. Linear mixed modeling compared scores at pre-RT, post-RT, 1-month pre-progression, and end of therapy (EOT). Twenty-nine patients and 43 caregivers participated. Patients and caregiver-proxies reported comparable emotional distress, physical function, and family relationships to norms. There were no significant differences for depressive symptoms, peer relationships, or family relationships for caregiver-proxies or patients across timepoints. Caregivers-proxies reported higher anxiety pre-RT compared to post-RT and pre-progression. Fatigue, pain interference, mobility, and upper extremity function were reported as mild- to moderately worse compared to the general population, particularly pre-RT and EOT. Caregivers reported higher physical symptoms than patients, but most caregiver-proxy and patient-reported scores were similar across timepoints and domains. Children with HGG and their caregivers reported comparable emotional functioning and relationship quality to the general population. Physical functioning was reported as worse by caregivers pre-RT and at EOT. Caregivers appeared to overestimate psychological and physical distress compared to patient-reports. Findings may reflect resilience of this population when facing adversity, while highlighting the benefit of psychosocial supports and well-tolerated therapy on HRQoL.