造血干细胞移植（HSCT）和嵌合抗原受体T细胞（CAR-T）疗法是潜在的治愈儿童生命威胁疾病的治疗选择，但可能导致高症状负担、健康相关的生活质量（HRQoL）下降和父母的心理困扰。这项研究的目的是描述在时间上父母心理困扰与症状负担和HRQoL之间的关联，这些症状和HRQoL是儿童在接受HSCT或CAR-T治疗时出现的。这项多中心研究采用了一种纵向、重复测量的设计。符合条件的英语和西班牙语口语的父母和他们2-18岁的接受计划的HSCT或CAR-T疗法的孩子参与了研究。父母在4个时间点（细胞输注前、细胞输注后的+30天、+60天、+90天）完成心理困扰的自我报告量表（Beck焦虑和抑郁问卷，感知压力量表）。对于儿童（对于年幼的儿童，由父母代理），在相应的时间点上，评估了记忆症状评估量表和PedsQL癌症模块。使用探索性因素分析从每个家长结果中创建了一个称为家长困扰的症状群集。采用纵向并行过程建模研究了父母心理困扰与儿童症状和HRQoL之间的关系。在4个站点共招募了140个儿童/父母二人组（280位参与者）。儿童的平均年龄为8.4岁/SD=5，56.4%为男性，主要患有恶性肿瘤（72.9％）。大多数父母是母亲（80.7％），平均年龄为39岁/SD = 8.1。与非临床成人样本产生的标准均值相比，父母的困扰水平一直较高。父母汇报了高频率的自杀意念（38.5％的基线，+30天的37％，+60天的27.4％，+90天的33.6％）。在基线到+90天的时间段内，观察到父母心理困扰、儿童HRQoL和儿童症状之间存在显著关系。研究结果表明，在孩子接受HSCT或CAR-T治疗期间，父母经历了具有临床意义的心理困扰，这种家长的困扰与儿童的HRQoL和症状评分有关。需要提供增加的心理教育支持，以应对父母的心理困扰，这有可能对儿童的HRQoL和症状产生积极的影响。版权所有©2023，由Elsevier公司出版。

Hematopoietic stem cell transplantation (HSCT) and chimeric antigen receptor T-cell (CAR-T) therapy are potentially curative treatment options for children with life-threatening conditions, but can result in a high symptom burden, poor health-related quality of life (HRQoL), and parent psychological distress.The purpose of this study is to describe, over time, the association between parent psychological distress with symptom burden and HRQoL among children undergoing HSCT or CAR-T therapy.This multisite study employed a longitudinal, repeated measures design. English and Spanish-speaking parents and their children ages 2-18 years with planned HSCT or CAR-T therapy were eligible. Parents completed self-report measures of psychological distress (Beck Anxiety and Depression Inventories, Perceived Stress Scale) at 4 timepoints: pre-cell infusion, and days +30, +60, +90 after the child's cell infusion. The Memorial Symptom Assessment Scale and PedsQL Cancer Module were administered to children (parent-proxy for younger children) at corresponding timepoints. A symptom cluster called parent distress was created from each parent outcome using exploratory factor analysis. Longitudinal parallel process modeling was used to study the relationship between parent distress and child symptoms and HRQoL over time.In total, 140 child/parent dyads (280 participants) were enrolled across 4 sites. Child mean age was 8.4 years/SD=5, 56.4% were male, primarily with an underlying diagnosis of malignancy (72.9%). Most parents were mothers (80.7%), mean age of 39 years/SD=8.1. Parent distress was consistently higher than normative means generated from non-clinical samples of adults. High frequency of suicidal ideation was reported by parents (38.5% at baseline, 37% at day +30, 27.4% at day +60. 33.6% at day +90). A significant relationship between parent distress, child HRQoL and child symptoms was observed at baseline and through day +90.Findings suggest that parents experience clinically relevant psychological distress throughout their child's HSCT or CAR-T therapy and this parent distress is associated with child HRQoL and symptom scores. Increased psychoeducational support tailored to address parental psychological distress is needed and has potential to positively impact the child's HRQoL and symptoms.Copyright © 2023. Published by Elsevier Inc.