父母对根据Nopho All2008急性淋巴细胞白血病治疗的儿童的治疗相关毒性的看法
Parents' perception of treatment-related toxicity in children treated according to the NOPHO ALL2008 protocol for acute lymphoblastic leukemia
影响因子:14.60000
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
摘要
这项研究旨在评估父母如何在急性淋巴细胞白血病（ALL）治疗期间感知与治疗相关的副作用。瑞典，芬兰和丹麦的儿童的父母1 - 17.9岁，他们还活着，在所有治疗结束后的第一次缓解≥6个月内，要求对有关其孩子如何受到与副作用的影响有关，其副作用如何受到与长春新碱（VCR），皮质固醇相关的副作用的影响与其他所有孩子相比，他们的孩子。 307个孩子的父母回答。超过三分之一的人报告说，他们的孩子受VCR（39.7％）和皮质类固醇（35.8％）的影响很大，步行困难，肌肉无力，疼痛，食欲的变化以及情绪波动是最常见和最常见的症状。除外周瘫痪（12.1％）外，Nopho All2008数据库缺乏这些毒性的报告。对于Nopho All2008数据库中报道的明显毒性，例如血栓形成和胰腺炎，父母的报告与数据库相似。尽管报道了治疗期间的总体负面影响，但父母通常将对孩子的影响评为较少或与其他所有孩子的影响。父母认为VCR和皮质类固醇疗法在所有治疗过程中对孩子产生负面影响，这在Nopho All2008毒性报告中未被捕获。我们的结果强调了在毒性报告中包括患者/父母报告的结果的重要性。
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.