Purpose

Brain tumors are the leading cause of death from childhood cancer. Although overall survival has improved due to earlier detection, better therapies, and improved surveillance, visual dysfunction and impaired vision-related quality-of-life (VR-QOL) are often unrecognized in children. This project investigated VR-QOL in pediatric brain tumor patients.

Methods

We evaluated visual impairment and quality-of-life (QOL) in a quality improvement project at one tertiary care center. Patients ≤ 18, greater than 6 months from diagnosis of brain tumor, excluding intrinsic anterior visual pathway tumors, underwent standardized neuro-ophthalmologic examination. Health-related QOL (HR-QOL) (PedsQL Brain Tumor Module) and VR-QOL questionnaires [CVFQ (Children’s Visual Function Questionnaire) in children < 8, and EYE-Q in children 8–18] were obtained from patients and parents.

Results

Among 77 patients, craniopharyngiomas (n = 16, 21%) and astrocytomas (n = 15, 20%) were the most common tumors. Among 44/77 (57%) visually impaired children, 7 (16%) were legally blind. Eye-Q median score was 3.40 (interquartile range 3.00–3.75), worse than average scores for normal children. Eye-Q score decreased 0.12 with every 0.1 increase in logMAR visual acuity (p < 0.001). Patients who were legally blind had a significantly lower Eye-Q score than those who were not [0.70 vs. 3.44 (p < 0.001)]. Cognitive HR-QOL scores decreased 1.3 for every 0.1 increase in logMAR visual acuity (p = 0.02).

Conclusions

Pediatric brain tumor patients’ vision, HR-QOL, and VR-QOL were often severely affected even when tumors were considered cured. Visual acuity and legal blindness correlated with VR-QOL. Systematic neuro-ophthalmologic examinations in pediatric primary brain tumor patients are necessary to facilitate early preventative and corrective ophthalmologic interventions.

中文翻译：

---

小儿原发性脑肿瘤患者的视力相关生活质量

目的

脑肿瘤是儿童癌症死亡的主要原因。尽管由于早期发现、更好的治疗和改进的监测，总体生存率有所提高，但儿童的视觉功能障碍和视力受损相关的生活质量 (VR-QOL) 往往未被识别。该项目调查了小儿脑肿瘤患者的 VR-QOL。

方法

我们在一个三级护理中心的质量改进项目中评估了视力障碍和生活质量 (QOL)。≤ 18 岁、脑肿瘤诊断超过 6 个月的患者（不包括内在的前视觉通路肿瘤）接受了标准化的神经眼科检查。健康相关 QOL (HR-QOL) (PedsQL Brain Tumor Module) 和 VR-QOL 问卷 [CVFQ (Children's Visual Function Questionnaire) 儿童 < 8, EYE-Q 儿童 8-18] 来自患者和父母。

结果

在 77 名患者中，颅咽管瘤（n = 16, 21%）和星形细胞瘤（n = 15, 20%）是最常见的肿瘤。在 44/77 (57%) 名视障儿童中，有 7 名 (16%) 合法失明。Eye-Q 中位得分为 3.40（四分位距 3.00-3.75），低于正常儿童的平均得分。随着 logMAR 视力每增加 0.1，Eye-Q 评分下降 0.12（p < 0.001）。合法失明的患者的 Eye-Q 评分明显低于正常失明的患者 [0.70 vs. 3.44 (p < 0.001)]。logMAR 视力每增加 0.1，认知 HR-QOL 评分就会降低 1.3（p = 0.02）。

结论

即使肿瘤被认为已治愈，小儿脑肿瘤患者的视力、HR-QOL 和 VR-QOL 也经常受到严重影响。视力和法定盲与 VR-QOL 相关。对小儿原发性脑肿瘤患者进行系统的神经眼科检查对于促进早期预防和矫正眼科干预是必要的。