Cancer and Palliative Care Outcomes Centre, Centre for Healthcare Transformation, School of Nursing, Faculty of Health, Queensland University of Technology, Queensland, Kelvin Grove, Australia.
Children's Brain Cancer Centre at the Centre for Children's Health Research, Children's Health Queensland Hospital and Health Service, Queensland, South Brisbane, Australia.
Pediatr Blood Cancer. 2024 Oct;71(10):e31199. doi: 10.1002/pbc.31199. Epub 2024 Jul 15.
The wellbeing of a child with brain tumour is affected by several factors. We present the first investigation of quality of life and family functioning in a parent and child across the first 12 months after diagnosis, examining potential factors to guide the provision of psychosocial resources to families who most need them.
Data were collected from parents/carers in Queensland, Australia, from 2020 to 2023. Child (parent/carer-proxy reported) and carer quality of life was assessed across three timepoints (repeated measures analysis of variance [ANOVA]) and by five potential co-variates (mixed between-within ANOVA). Family functioning was assessed across two timepoints (repeated-measures t-test), and by potential co-variates (repeated measures ANOVA). Univariate relationships were explored with Pearson's correlation coefficient; significant relationships were entered into multiple regression models.
Ninety-six diverse families were represented. Quality of life (child, carer) and family functioning did not change across time. Children from households with lower income reported worse cognitive difficulties (p = .023) and pain and hurt (p = .013) than those from a higher income. Caregiver quality of life was poorer for those whose child had received chemotherapy and/or radiation, was aged less than 4 years at diagnosis, and had a lower household income. At 12 months, caregiver quality of life was correlated with family functioning (r = -.45, p < .001), with positive adaptation being a significant key predictor (beta = -.66, p < .005).
The following factors indicate a need for increased early psychosocial support: cognitive difficulties, aged <4 years at diagnosis, receiving chemotherapy and/or radiation, and low household income.
儿童脑瘤患者的整体健康状况受到多种因素的影响。本研究首次调查了患儿及其家长在确诊后首个 12 个月内的生活质量和家庭功能，旨在探究潜在因素，以便为最需要的家庭提供社会心理支持。
本研究于 2020 年至 2023 年在澳大利亚昆士兰州收集数据。采用重复测量方差分析（ANOVA）评估患儿（由家长/照顾者代理报告）和照顾者的生活质量，同时评估五个潜在协变量。采用重复测量 t 检验评估家庭功能，同时评估五个潜在协变量。采用皮尔逊相关系数探索单变量关系，将显著相关的变量纳入多元回归模型。
本研究共纳入 96 个多样化的家庭。患儿和照顾者的生活质量以及家庭功能在整个研究期间均未发生变化。收入较低的家庭的患儿报告认知困难（p=.023）和疼痛（p=.013）更严重。接受化疗和/或放疗、诊断时年龄小于 4 岁、家庭收入较低的患儿的照顾者生活质量更差。12 个月时，照顾者生活质量与家庭功能呈负相关（r=-.45，p<.001），积极适应是重要的预测因素（β=-.66，p<.005）。
认知困难、诊断时年龄小于 4 岁、接受化疗和/或放疗、家庭收入较低的患儿需要更多的早期社会心理支持。
