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

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.