Department of Surgery, Aga Khan University, Karachi, Pakistan.
Global Health and Migration Unit Department of Women's and Children's Health, Uppsala University, Box 256, Uppsala, 751 05, Sweden.
BMC Pediatr. 2024 Jun 8;24(1):389. doi: 10.1186/s12887-024-04867-z.
There are limited data available, particularly in low- and middle-income countries (LMICs), on the long-term quality of life (QoL) and family functioning of primary caregivers of children and young people (CYPs) affected by primary brain tumors (PBTs). This study aimed to assess the factors associated with the mean change in QoL and family functioning scores of primary caregivers of CYP patients with PBTs 12 months posttreatment.
This prospective cohort study enrolled CYPs aged 5-21 years with newly diagnosed PBTs and their primary caregivers. The study was carried out between November 2020 and July 2023. The primary caregivers of CYPs were recruited from two major tertiary care centers in Karachi, Pakistan. The primary caregivers QoL were assessed by the Pediatric Quality of Life Inventory (PedsQL) Family Impact Module. The assessment was undertaken by a psychologist at the time of diagnosis and 12 months posttreatment. The data were analyzed with STATA version 12.
Forty-eight CYPs with newly diagnosed PBTs and their primary caregivers (46 mothers and 2 fathers) were enrolled. At 12 months posttreatment, 25 (52%) CYPs and their primary caregivers (mothers) were reassessed, and 23 (48%) were lost to follow-up. On multivariable analysis, a significant decrease in mothers' mean 12-month posttreatment QoL and family functioning scores was associated with CYP having posttreatment seizures (beta= -10.2; 95% CI: -18.4 to -2.0) and with the financial burden associated with the CYP's illness (beta= -0.3; 95% CI: -0.4 to -0.1). However, in those cases where CYP had higher posttreatment quality of life scores (beta = 0.4; 95% CI = 0.1, 0.6) and posttreatment higher verbal intelligence scores (beta = 0.1; 95% CI = 0.01, 0.3), the mothers' QoL and family functioning scores were significantly greater.
We found a significant decrease in QoL of mothers who had a high financial burden and whose CYP had posttreatment seizures. However, those whose CYPs had higher posttreatment verbal intelligence scores and quality of life scores had significantly greater QoL scores. Identification of the factors that influence primary caregivers QoL has the potential to aid in the development of targeted strategies to alleviate stressors and improve the overall quality of life for primary caregivers and their children who are at high risk.
在低中等收入国家(LMICs),针对儿童和青少年(CYP)原发性脑肿瘤(PBT)患者主要照顾者治疗后 12 个月的生活质量(QoL)和家庭功能的长期变化,数据十分有限。本研究旨在评估与治疗后 12 个月原发性脑肿瘤患儿主要照顾者的 QoL 和家庭功能评分平均变化相关的因素。
这是一项前瞻性队列研究,纳入了年龄在 5-21 岁之间的新诊断为 PBT 的 CYP 和他们的主要照顾者。研究于 2020 年 11 月至 2023 年 7 月进行。来自巴基斯坦卡拉奇的两家主要三级护理中心的主要照顾者被招募。通过儿童生活质量量表(PedsQL)家庭影响模块评估主要照顾者的 QoL。在诊断时和治疗后 12 个月由心理学家进行评估。数据使用 STATA 版本 12 进行分析。
共有 48 名新诊断为 PBT 的 CYP 和他们的主要照顾者(46 名母亲和 2 名父亲)入组。治疗后 12 个月,25 名(52%)CYP 和他们的主要照顾者(母亲)接受了重新评估,23 名(48%)失访。多变量分析显示,CYP 治疗后出现癫痫(β= -10.2;95% CI:-18.4 至 -2.0)和 CYP 疾病相关的经济负担(β= -0.3;95% CI:-0.4 至 -0.1)与母亲治疗后 12 个月 QoL 和家庭功能评分显著下降相关。然而,在 CYP 治疗后生活质量评分较高(β= 0.4;95% CI= 0.1,0.6)和治疗后言语智力评分较高的情况下(β= 0.1;95% CI= 0.01,0.3),母亲的 QoL 和家庭功能评分显著更高。
我们发现,经济负担高且 CYP 治疗后出现癫痫的母亲 QoL 显著下降。然而,那些 CYP 言语智力评分和生活质量评分较高的母亲,其 QoL 评分显著更高。确定影响主要照顾者 QoL 的因素有助于制定有针对性的策略,以减轻压力源并提高高危主要照顾者及其子女的整体生活质量。