Background/Objectives:Parents of children with acute lymphoblastic leukaemia (ALL) experience emotional distress throughout their child’s treatment course. This study describes the psychological experience of Australian and New Zealand parents of children diagnosed with ALL.Methods:This prospective, longitudinal study assessed distress, anxiety, depression, anger and the need for help in parents of children with newly diagnosed ALL across eight sites between October 2018 and November 2022. Psychological symptoms were quantified using the Emotion Thermometer (ET) tool and Patient-Reported Outcome Measurement Information System (PROMIS) questionnaires. Participants were recruited within ninety days of chemotherapy commencement, with surveys distributed bimonthly thereafter.Results:One hundred and seventeen participants completed 327 survey responses spanning 0 to 62 months post-diagnosis. Parental distress peaked within the first 6 months and 40% of parents reported clinically significant symptoms across four or more domains as measured by our questionnaires. Anxiety was the most consistently elevated symptom, with over 50% of responses above the clinical cut-off. Depression and the need for help also peaked closer to diagnosis and declined over time. In contrast, anger remained stable, with 27% reporting clinically significant scores across all time points. Increased time since diagnosis was significantly associated with reductions in distress, anxiety and depression scores.Conclusions:Australian and New Zealand parents experience high levels of psychological distress within the first six months following their child’s diagnosis of ALL. A notable minority continue to report elevated distress levels over time, identifying a need for improved psychological support for family wellbeing throughout the ALL treatment trajectory.
背景/目的：急性淋巴细胞白血病（ALL）患儿的父母在孩子治疗过程中会经历情绪困扰。本研究描述了澳大利亚和新西兰ALL患儿父母的心理体验。 方法：这项前瞻性纵向研究于2018年10月至2022年11月期间，在八个中心评估了新诊断ALL患儿父母的困扰、焦虑、抑郁、愤怒及求助需求。采用情绪温度计（ET）和患者报告结局测量信息系统（PROMIS）量表量化心理症状。参与者在化疗开始后90天内入组，随后每两个月完成一次问卷调查。 结果：117名参与者共完成327份调查问卷，时间跨度为诊断后0至62个月。父母的心理困扰在诊断后6个月内达到峰值，40%的父母在问卷评估的四个及以上维度中报告了具有临床意义的症状。焦虑是持续最突出的症状，超过50%的反馈高于临床临界值。抑郁和求助需求同样在诊断初期达到高峰，随后随时间推移逐渐下降。相比之下，愤怒情绪保持稳定，27%的参与者在所有时间点均报告具有临床意义的评分。诊断后时间延长与困扰、焦虑及抑郁评分的显著下降相关。 结论：澳大利亚和新西兰的ALL患儿父母在孩子确诊后的前六个月内经历高水平的心理困扰。值得注意的是，少数父母随时间推移仍持续报告较高的困扰水平，这表明有必要在ALL治疗全程中加强心理支持以促进家庭福祉。
肿瘤(癌症)患者之家