Department of Radiation Oncology, Winship Cancer Institute of Emory University, Atlanta, Georgia.
Department of Radiation Oncology, Massachusetts General Hospital, Boston, Massachusetts.
Neuro Oncol. 2020 Sep 29;22(9):1379-1387. doi: 10.1093/neuonc/noaa042.
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 and 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), and 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 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 PRT at a very young age is variable, with over a third achieving HRQoL levels commensurate with healthy children.
1. One third of survivors reported long-term HRQoL scores comparable to those of healthy children.2. Treatment for hydrocephalus or a feeding tube was associated with significantly lower HRQoL.3. Total core HRQoL scores remained stable from baseline to last follow-up.
本分析旨在报告在非常年幼时接受质子治疗（PRT）的脑肿瘤幸存者的长期健康相关生活质量（HRQoL）。
2000 年至 2011 年间，59 名<4 岁的儿童接受了 PRT。40 个家庭参与了研究。HRQoL 通过儿童自我报告（CSR；年龄≥5 岁）和家长代理报告（PPR；年龄 2+岁）使用 PedsQL 核心量表进行评估。
PRT 时的中位年龄为 2.5 岁（范围，0.3-3.8），最后一次随访时为 9.1 岁（5.5-18）。最常见的诊断是室管膜瘤（n=22）和髓母细胞瘤（n=7）。中位随访时间为 6.7 年（3-15.4）。随访时的平均 CSR 和 PPR 评分分别为：总核心（78.4 和 72.9）、身体（82.9 和 75.2）、心理社会（76.0 和 71.6）、情感（74.4 和 70.7）、社会（81.2 和 75.1）和学业（72.4 和 69.9）。家长报告的 HRQoL 在 37.5%的患者中处于先前定义的健康儿童范围内，在 45%的患者中处于严重健康状况的儿童范围内。除社会功能外，PPR 的 HRQoL 在所有领域从基线到最后一次随访均保持稳定。胃造口管史与 CSR 和 PPR HRQoL 较差显著相关。多变量分析。90%的儿童在普通教室上课，14 名（36%）使用教室辅助工具，9 名（23%）使用课外导师，18 名（46%）有个性化教育计划。
在非常年幼时接受 PRT 治疗的脑肿瘤幸存者的长期 HRQoL 存在差异，超过三分之一的幸存者报告的 HRQoL 水平与健康儿童相当。
