对家长和患者同时报告的结果的研究主要集中在达成一致。然而，人们对如何解释和解决这两种观点之间的差异知之甚少，这种差异并不罕见。 探讨在儿科晚期癌症背景下，家长对与孩子同时报告儿童症状和生活质量 (QoL) 的看法这项定性研究被纳入 PediQUEST 反应研究中，这是一项针对晚期癌症儿童及时姑息治疗整合的随机对照试验。在 18 周的时间里，研究二人组（≥5 岁的儿童和一名家长）每周完成评估症状和生活质量的 e-PRO。使用扎根理论方法，我们对研究结束时的半结构化家长访谈进行了二次分析，以检验他们对同时报告症状的看法。在本次分析中纳入的 110 名随机二人组中，有 77 名家长完成了退出访谈。大多数是非西班牙裔白人母亲。家长对同时报告儿童症状和生活质量的反思总结为以下主题：症状体验是主观的，家长和孩子的观点是独特的，家长在适应儿童治疗时提出的问题较少，孩子可能会犹豫分享症状。为了更好地掌握孩子的经历，家长制定了积极主动的沟通策略。受访家长承认，家长报​​告和孩子自我报告是截然不同且互补的。他们的观点为临床医生和研究人员提供了关于儿科晚期癌症护理中并发结果测量的实施和解释的指导。版权所有 © 2024。由 Elsevier Inc. 出版。

Research on concurrent parent and patient-reported outcomes has primarily focused on reaching agreement. However, little is known about how to interpret and address discrepancies, which are not uncommon, between both viewpoints.To explore parents' perspectives on reporting about child symptoms and quality of life (QoL) concurrently with their child in the context of pediatric advanced cancer.This qualitative study was embedded in the PediQUEST Response Study, a randomized controlled trial of timely palliative care integration in children with advanced cancer. Over 18 weeks, study dyads (children ≥5 years old and one parent) completed weekly e-PROs assessing symptoms and QoL. Using a grounded theory approach, we ran a secondary analysis of end-of-study semi-structured parent interviews to examine their views on concurrent reporting of symptoms.Out of 110 randomized dyads included in this analysis, 77 parents completed an exit interview. Most were White non-Hispanic mothers. Parent reflections on concurrent reporting of child symptoms and QoL are summarized in the following themes: symptom experience is subjective, parent and child viewpoints are unique, parents ask fewer questions as they adapt to child treatment, and children may hesitate to share symptoms. To better grasp their child's experience, parents developed proactive communication strategies.Interviewed parents acknowledged that parent report and child self-report are distinct and complementary. Their perspectives provide guidance to clinicians and researchers about the implementation and interpretation of concurrent outcomes measurement in pediatric advanced cancer care.Copyright © 2024. Published by Elsevier Inc.