父母对儿童使用NOPHO ALL2008方案治疗急性淋巴细胞白血病相关毒性的认知

Parents' perception of treatment-related toxicity in children treated according to the NOPHO ALL2008 protocol for acute lymphoblastic leukemia

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HemaSphere

影响因子:14.6

分区:医学3区 / 血液学3区

发表日期:2024 Jul

作者: Nina Mogensen, Ulrika Kreicbergs, Birgitte K Albertsen, Päivi M Lähteenmäki, Mats Heyman, Arja Harila

DOI: 10.1002/hem3.124

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摘要

本研究旨在评估父母对儿童在接受急性淋巴细胞白血病（ALL）治疗期间相关副作用的感知。在瑞典、芬兰和丹麦，诊断时年龄为1-17.9岁的白血病儿童，存活且在ALL治疗结束后≥6个月处于第一缓解期的患者中，父母被要求对其子女受到的醋酸铝（VCR）、皮质类固醇、长春碱（PEG-ASP）和维持治疗相关副作用，以及这些治疗的总体影响、一般并发症及其与其他ALL儿童的比较进行反馈。共有307名儿童的父母作出回应。超过三分之一的父母认为其子女受到VCR（39.7%）和皮质类固醇（35.8%）的影响较大，最常见且严重的症状包括行走困难、肌肉无力、疼痛、食欲变化和情绪波动。除外周性麻痹（12.1%）外，NOPHO ALL2008数据库中未报告这些毒性。对于数据库中已报告的特定毒性，如血栓和胰腺炎，父母报告与数据库一致。虽然治疗期间总体负面影响较高，但父母通常认为对其子女的影响低于或与其他ALL儿童相似。父母特别认为VCR和皮质类固醇在ALL治疗期间对子女产生了负面影响，但这些未在NOPHO ALL2008毒性报告中体现。我们的结果强调在毒性报告中加入患者/父母报告结局的重要性。

Abstract

This study aimed to assess how parents perceived treatment-related side effects during acute lymphoblastic leukemia (ALL) treatment. Parents of children 1-17.9 years at diagnosis in Sweden, Finland, and Denmark who were alive and in first remission ≥6 months after end of ALL treatment were asked to respond on specific items regarding how their child was affected by side effects related to vincristine (VCR), corticosteroids, peg-asparaginase (ASP), and maintenance therapy, as well as overall impact of these treatments, complications in general, and their perception of impact on their child in comparison with other children with ALL. Parents of 307 children responded. More than a third reported that their child had been affected to a high extent by VCR (39.7%) and corticosteroids (35.8%), with walking difficulties, muscular weakness, pain, changes in appetite, and mood swings as the most common and severe symptoms. Reporting of these toxicities was lacking from the NOPHO ALL2008 database, except for peripheral paralysis (12.1%). For distinct toxicities reported in the NOPHO ALL2008 database, for example, thrombosis and pancreatitis, parent reports were similar to the database. Although a high overall negative impact during treatment was reported, parents generally rated the impact on their child as less, or similar, to other children with ALL. Parents perceived VCR and corticosteroid therapy, in particular, to have a negative impact on their child during ALL treatment, which was not captured in the NOPHO ALL2008 toxicity reporting. Our results highlight the importance of including patient/parent-reported outcomes in toxicity reporting.