Quality of life in pediatric patients treated with adjuvant proton radiation for craniopharyngiomas.

Abstract

Background: Pediatric craniopharyngiomas are curable tumors. Significant morbidity is reported from the tumor itself as well as treatments (surgery and radiotherapy (RT)), which adversely affects health-related quality of life (HRQoL) outcomes, which we reported and correlated with other health outcomes.

Methods: HRQoL data was collected from a prospective cohort of proton treated patients with craniopharyngiomas (≤ 22 years at the time of RT). Parents and children were surveyed using the Pediatric Quality of Life Inventory (PedsQL) collected at baseline and annually thereafter. We compared last follow-up parent-proxy reports (PPR) and Child-self reports (CSR) in patients with and without treatment sequelae. We compared last follow-up PPR total core scores (TCS) to values representative of a normal population.

Results: 47 participants were included and median follow-up was 11.2 years. Median age at RT was 9.7 years. PPR and CSR TCS at last follow-up, 70.8 and 75.5 respectively, were significantly lower than normal controls (p < 0.01). At last follow up, PPR TCS was lower in patients with arginine vasopressin deficiency (AVP-D) (65.6 vs. 79.0, p = 0.01), sex hormone deficiency (67.6 vs. 78.85 p = 0.03), and hyperphagia (64.1 vs. 79.4, p < 0.01). Patients who were treated with RT at time of recurrence had 1.40 × (95% CI, 1.08-1.81, p = 0.011) the rate of sequala development compared to those treated at initial diagnosis.

Conclusions: HRQoL TCSs were significantly worse than healthy controls. Hyperphagia, AVP-D and sex hormone deficiencies, correlated with worse PPR TCS. Those treated with RT at time of recurrence had higher sequalae burden than those treated at initial diagnosis.