Abstract

Pediatric central nervous system tumor survivors (CNSTS) experience late effects that may affect their health-related quality of life (HRQOL). The study aims: i) compare HRQOL among Malaysian CNSTS with acute lymphoblastic leukemia survivors (ALLS) and healthy children, and ii) explore factors associated with low HRQOL. We performed a comparative cross-sectional HRQOL study of 46 CNSTS aged 5-18 years and 90 ALLS (age and gender-matched) who completed treatment for >1 year, and a published cohort of healthy children. Pediatric Quality of Life Inventory (PedsQL) was used for all groups and PedsQL Cancer Module for CNSTS and ALLS. Multiple regression analysis was used to determine factors associated with low HRQOL. Mean PedsQL total scale score, physical health score and psychosocial health score of CNSTS were 69.0 (SD 20.3), 68.7 (SD 27.9) and 69.2 (SD 19.2) respectively. These scores were significantly lower in all domains particularly in teenagers compared with healthy children and ALLS. The median PedsQL Cancer Module score of CNSTS was significantly lower than ALLS in total scale, cognitive problems and communication. Physical impairment was associated with lower PedsQL scores in all 3 domains; special education placement was associated with lower PedsQL total scale and physical health scores and clinically significant internalizing behavioral difficulties score was associated with lower PedsQL psychosocial health scores. CNSTS reported lower PedsQL scores in all domains than ALLS and healthy children. Clinicians need to be vigilant of HRQOL needs among CNSTS, especially those with risk factors of special education needs, physical impairment, and internalizing behavioral difficulties.

摘要

小儿中枢神经系统肿瘤幸存者 (CNSTS) 会经历可能影响其健康相关生活质量 (HRQOL) 的晚期效应。该研究旨在：i) 比较马来西亚 CNSTS 与急性淋巴细胞白血病幸存者 (ALLS) 和健康儿童的 HRQOL，以及 ii) 探索与低 HRQOL 相关的因素。我们对完成治疗超过 1 年的 46 名 5-18 岁 CNSTS 和 90 名 ALLS（年龄和性别匹配）以及已发表的健康儿童队列进行了比较性横断面 HRQOL 研究。儿科生活质量清单 (PedsQL) 用于所有组，PedsQL 癌症模块用于 CNSTS 和 ALLS。多元回归分析用于确定与低 HRQOL 相关的因素。CNSTS 的平均 PedsQL 总量表得分、身体健康得分和社会心理健康得分分别为 69.0 (SD 20.3)、68.7 (SD 27. 9) 和 69.2 (SD 19.2) 分别。与健康儿童和 ALLS 相比，这些分数在所有领域都显着降低，尤其是在青少年中。CNSTS 的中位 PedsQL 癌症模块评分在总量表、认知问题和沟通方面显着低于 ALLS。身体损伤与所有 3 个领域的较低 PedsQL 分数相关；特殊教育安置与较低的 PedsQL 总量表和身体健康评分相关，临床上显着的内化行为困难评分与较低的 PedsQL 社会心理健康评分相关。CNSTS 报告的所有领域的 PedsQL 分数均低于 ALLS 和健康儿童。临床医生需要警惕 CNSTS 的 HRQOL 需求，尤其是那些具有特殊教育需求、身体损伤、