父母对儿童晚期癌症中父母及儿童报告的结局感知：一项定性研究

Parent Views on Parent and Child-reported Outcomes in Pediatric Advanced Cancer: A Qualitative Study

JOURNAL OF PAIN AND SYMPTOM MANAGEMENT

影响因子:3.5

分区:医学2区 / 临床神经病学2区卫生保健与服务2区医学：内科2区

发表日期:2025 Feb

作者: Deborah Feifer, Alexandra F Merz, Madeline Avery, Erika Tsuchiyose, Ijeoma J Eche-Ugwu, Opeyemi Awofeso, Joanne Wolfe, Veronica Dussel, Maria Laura Requena

DOI: 10.1016/j.jpainsymman.2024.10.001

摘要

关于父母和患者共同报告结局的研究主要集中在达成一致，但对如何解释和应对两者之间的差异尚知之甚少，这种差异并不少见。旨在探讨父母在儿童晚期癌症背景下，如何同时报告儿童的症状和生活质量（QoL）的观点。本质性研究嵌入在PediQUEST响应研究中，这是一个关于及时缓和护理整合的随机对照试验，研究对象为患有晚期癌症的儿童。在18周内，研究配对（年龄≥5岁的儿童及其一名父母）每周完成电子自我报告（e-PRO）以评估症状和QoL。采用基础理论方法，对终期访谈的二次分析旨在探讨父母对同时报告儿童症状的看法。共纳入110对配对，77位父母完成了退出访谈。大多为白人非西班牙裔母亲。父母对同时报告儿童症状和QoL的反思总结如下主题：症状体验具有主观性，父母与儿童的观点各异，父母在适应儿童治疗过程中提问较少，儿童可能犹豫不愿分享症状。为了更好理解孩子的体验，父母发展了主动沟通策略。访谈中的父母承认，父母报告与儿童自我报告是不同且互补的。其观点为临床医生和研究者提供了在儿童晚期癌症护理中实施和解释同时结局测量的指导。

Abstract

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.gov NCT03408314.