Departments of Pediatrics.
Pediatric Hematology.
J Pediatr Hematol Oncol. 2021 Jan;43(1):e56-e63. doi: 10.1097/MPH.0000000000001959.
The importance of health-related quality of life (HRQoL) in patients with acute lymphoblastic leukemia (ALL) has increased in recent years. This study aimed to assess HRQoL in children with ALL, affecting factors, and the relationship between parent proxy-report and child self-report HRQoL.
A total of 59 children and their parents (both mother and father) were enrolled in this cross-sectional study. Turkish version of the Pediatric Quality of Life Inventory (PedsQL) 3.0 Cancer Modules were used to determine HRQoL.
According to subscales of the self-report form, nausea and operational anxiety scores differed significantly by the treatment status; communication score varied considerably by the hospitalization length of stay; pain and hurt, cognitive problems, and perceived physical appearance scores differed significantly by the maternal chronic disease status (P<0.05). The presence of maternal chronic disease was significantly related to the total score of the parent-proxy report (mother) (P<0.05). There was a moderate correlation between total scores of child and mother (P<0.05, r=0.419) but not with the father.
Children on-treatment had significant problems in nausea and procedural anxiety subscales; however, children who were hospitalized more had fewer issues in the communication subscale. Also, children whose mother had chronic disease had poorer HRQoL regarding pain and hurt cognitive problems and treatment anxiety. Given the importance of assessment and monitoring HRQoL in children with ALL, health professionals should be aware of how parents' chronic disease affects HRQoL. Psychosocial support should be provided to children and their parents, especially for those whose parents have a chronic illness.
近年来，健康相关生活质量（HRQoL）在急性淋巴细胞白血病（ALL）患者中的重要性日益增加。本研究旨在评估 ALL 患儿的 HRQoL、影响因素以及父母代报告与儿童自报 HRQoL 之间的关系。
本横断面研究共纳入 59 名儿童及其父母（母亲和父亲）。采用土耳其语版儿童生存质量测定量表核心量表 3.0 癌症模块评估 HRQoL。
根据自报形式的子量表，恶心和操作焦虑评分因治疗状态而异；沟通评分因住院时间长短而异；疼痛和伤害、认知问题和感知身体外观评分因母亲慢性疾病状态而异（P<0.05）。母亲慢性疾病的存在与父母代报告（母亲）的总分显著相关（P<0.05）。儿童和母亲总分之间存在中度相关性（P<0.05，r=0.419），但与父亲无相关性。
治疗中的儿童在恶心和操作焦虑子量表中存在明显问题；然而，住院时间较长的儿童在沟通子量表中问题较少。此外，母亲患有慢性疾病的儿童在疼痛和伤害、认知问题和治疗焦虑方面的 HRQoL 较差。鉴于 ALL 患儿 HRQoL 的评估和监测的重要性，卫生专业人员应了解父母的慢性疾病如何影响 HRQoL。应向儿童及其父母提供社会心理支持，特别是对于那些父母患有慢性病的儿童。
