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Neuro Oncol. 2020 Feb 17. pii: noaa042. doi: 10.1093/neuonc/noaa042. [Epub ahead of print]

Long-term Health Related Quality of Life in Pediatric Brain Tumor Survivors Treated with Proton Radiotherapy at <4 Years of Age.

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Department of Radiation Oncology, Winship Cancer Institute of Emory University, Atlanta, GA.
Department of Radiation Oncology, Massachusetts General Hospital, Boston, MA.
Department of Pediatrics, Massachusetts General Hospital, Boston, MA.



The purpose of this analysis is to report long-term health related quality of life (HRQoL) among brain tumor survivors treated with proton therapy (PRT) at a very young age.


Fifty-nine children < 4 years old received PRT between 2000-2011. Forty families participated. HRQoL was assessed by child self report (CSR, age ≥ 5) and parent proxy report (PPR, age 2+) using the PedsQL Core.


The median age was 2.5 years (range 0.3-3.8) at PRT and 9.1 years (5.5-18) at last follow-up. The most common diagnoses were ependymoma (n=22), and medulloblastoma (n=7). Median follow-up is 6.7 years (3-15.4). Follow-up mean CSR and PPR scores were: total core (78.4 and 72.9); physical (82.9 and 75.2), psychosocial (76.0 and 71.6) emotional (74.4 and 70.7), social (81.2 and 75.1), school (72.4 and 69.9). Parent-reported HRQoL fell within a previously defined range for healthy children in 37.5% of patients, and for children with severe health conditions in 45% of patients. PPR HRQoL was stable from baseline to last follow-up among all domains except for the social functioning. History of gastrostomy-tube was significantly associated with poorer CSR and PPR HRQoL on multivariable analysis. Ninety-percent of children functioned in a regular classroom; 14(36%) used a classroom aid, 9(23%) used an outside tutor, and 18(46%) had an individualized education plan.


Long-term HRQoL among brain tumor survivors treated with proton therapy at a very young age is variable with over a third achieving HRQoL levels commensurate with healthy children.


brain tumor; pediatric; proton; quality-of-life; radiation


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