Erika Tsuchiyose, Deborah Feifer, Alexandra F Merz, Madeline Avery, Ijeoma J Eche-Ugwu, Opeyemi Awofeso, Liliana Orellana, Denise Becker, Chris Feudtner, Jason L Freedman, Tammy I Kang, Abby R Rosenberg, Elisha D Waldman, Christina K Ullrich, Joanne Wolfe, María L Requena, Veronica Dussel
{"title":"儿童癌症的研究负担：来自PediQUEST反应试验的混合方法研究。","authors":"Erika Tsuchiyose, Deborah Feifer, Alexandra F Merz, Madeline Avery, Ijeoma J Eche-Ugwu, Opeyemi Awofeso, Liliana Orellana, Denise Becker, Chris Feudtner, Jason L Freedman, Tammy I Kang, Abby R Rosenberg, Elisha D Waldman, Christina K Ullrich, Joanne Wolfe, María L Requena, Veronica Dussel","doi":"10.1016/j.jpainsymman.2025.08.032","DOIUrl":null,"url":null,"abstract":"<p><strong>Context: </strong>Research burden in pediatric advanced cancer is understudied.</p><p><strong>Objectives: </strong>To analyze study burden among parents and children participating in the PediQUEST Response Trial, and explore associated factors, including belonging to historically marginalized (HM) backgrounds or facing economic hardship (EH).</p><p><strong>Methods: </strong>Mixed-methods secondary analysis of data collected for an RCT. Children ≥2 years old with advanced cancer and a parent were enrolled for 18-weeks across five US pediatric cancer centers. Trough thematic analysis, we examined all parents and child (≥8yo) interviews to identify burden sources. We created a six-level \"degree of burden\" variable that integrated qualitative data (burden sources, levels 0-3) and quantitative data (dropout status, levels 4-5). Social disparity was grouped as: neither HM nor EH, either HM or EH, and both. We used ordinal logistic regression to explore burden-disparity associations.</p><p><strong>Results: </strong>Among 154 randomized dyads, 149 had HM/EH data; 102 families completed interviews (102 parents, 44 children). Two burden themes were identified: study-related and daily life stressors. Most parents (62.4%) and children (48.8%) had burden levels 0-3; high levels (4-5) affected about 20% of families. Social disparity levels were 47.7% HM-/EH-, 30.9% HM+ or EH+, and 21.5% HM+/EH+. Parent burden increased with social disparity (HM+ or EH+ vs. HM-/EH-: cumulative OR 2.3, 95%CI 1.1, 5.1; HM+/EH+ vs. HM-/EH- OR 4.9, 95% CI 1.9, 12.2); no associations found for child's burden.</p><p><strong>Conclusion: </strong>Study burden was mostly low to moderate but higher in families endorsing social disparities. Enhanced support strategies may promote diversity in pediatric advanced cancer research.</p><p><strong>Clinicaltrials: </strong>gov NCT03408314.</p>","PeriodicalId":16634,"journal":{"name":"Journal of pain and symptom management","volume":" ","pages":""},"PeriodicalIF":3.5000,"publicationDate":"2025-09-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12439119/pdf/","citationCount":"0","resultStr":"{\"title\":\"Research Burden in Pediatric Cancer: A Mixed Methods Study From the PediQUEST Response Trial.\",\"authors\":\"Erika Tsuchiyose, Deborah Feifer, Alexandra F Merz, Madeline Avery, Ijeoma J Eche-Ugwu, Opeyemi Awofeso, Liliana Orellana, Denise Becker, Chris Feudtner, Jason L Freedman, Tammy I Kang, Abby R Rosenberg, Elisha D Waldman, Christina K Ullrich, Joanne Wolfe, María L Requena, Veronica Dussel\",\"doi\":\"10.1016/j.jpainsymman.2025.08.032\",\"DOIUrl\":null,\"url\":null,\"abstract\":\"<p><strong>Context: </strong>Research burden in pediatric advanced cancer is understudied.</p><p><strong>Objectives: </strong>To analyze study burden among parents and children participating in the PediQUEST Response Trial, and explore associated factors, including belonging to historically marginalized (HM) backgrounds or facing economic hardship (EH).</p><p><strong>Methods: </strong>Mixed-methods secondary analysis of data collected for an RCT. 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Parent burden increased with social disparity (HM+ or EH+ vs. HM-/EH-: cumulative OR 2.3, 95%CI 1.1, 5.1; HM+/EH+ vs. HM-/EH- OR 4.9, 95% CI 1.9, 12.2); no associations found for child's burden.</p><p><strong>Conclusion: </strong>Study burden was mostly low to moderate but higher in families endorsing social disparities. 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引用次数: 0
摘要
背景：儿童晚期癌症的研究负担尚未得到充分研究。目的：分析参与PediQUEST应答试验的父母和儿童的研究负担，并探讨相关因素，包括属于历史边缘化（HM）背景或面临经济困难（EH）。方法：采用混合方法对一项随机对照试验收集的资料进行二次分析。≥2岁的晚期癌症儿童和家长在美国5个儿科癌症中心进行了为期18周的研究。通过主题分析，我们检查了所有父母和儿童（≥80岁）的访谈，以确定负担来源。我们创建了一个六个级别的“负担程度”变量，该变量集成了定性数据（负担来源，级别0-3）和定量数据（辍学状态，级别4-5）。社会差异被分为：既不高也不高，既高也不高，两者都有。我们使用有序逻辑回归来探索负担-差异的关联。结果：154对随机分组中，149对有HM/EH数据；102个家庭完成访谈（102名家长，44名儿童）。确定了两种负担主题：研究相关压力和日常生活压力。大多数家长（62.4%）和孩子（48.8%）的负担水平为0-3级；高水平（4-5）影响了大约20%的家庭。社会差异水平为：HM-/EH- 47.7%， HM+或EH+ 30.9%, HM+/EH+ 21.5%。父母负担随社会差异而增加（HM+或EH+ vs HM-/EH-：累积or为2.3,95%CI为1.1,5.1；HM+/EH+ vs HM-/EH- or为4.9,95%CI为1.9,12.2）；没有发现与儿童负担有关。结论：家庭的学习负担多为低至中等，但较高，存在社会差异。加强支持策略可能促进儿童晚期癌症研究的多样性。临床试验：gov NCT03408314。
Research Burden in Pediatric Cancer: A Mixed Methods Study From the PediQUEST Response Trial.
Context: Research burden in pediatric advanced cancer is understudied.
Objectives: To analyze study burden among parents and children participating in the PediQUEST Response Trial, and explore associated factors, including belonging to historically marginalized (HM) backgrounds or facing economic hardship (EH).
Methods: Mixed-methods secondary analysis of data collected for an RCT. Children ≥2 years old with advanced cancer and a parent were enrolled for 18-weeks across five US pediatric cancer centers. Trough thematic analysis, we examined all parents and child (≥8yo) interviews to identify burden sources. We created a six-level "degree of burden" variable that integrated qualitative data (burden sources, levels 0-3) and quantitative data (dropout status, levels 4-5). Social disparity was grouped as: neither HM nor EH, either HM or EH, and both. We used ordinal logistic regression to explore burden-disparity associations.
Results: Among 154 randomized dyads, 149 had HM/EH data; 102 families completed interviews (102 parents, 44 children). Two burden themes were identified: study-related and daily life stressors. Most parents (62.4%) and children (48.8%) had burden levels 0-3; high levels (4-5) affected about 20% of families. Social disparity levels were 47.7% HM-/EH-, 30.9% HM+ or EH+, and 21.5% HM+/EH+. Parent burden increased with social disparity (HM+ or EH+ vs. HM-/EH-: cumulative OR 2.3, 95%CI 1.1, 5.1; HM+/EH+ vs. HM-/EH- OR 4.9, 95% CI 1.9, 12.2); no associations found for child's burden.
Conclusion: Study burden was mostly low to moderate but higher in families endorsing social disparities. Enhanced support strategies may promote diversity in pediatric advanced cancer research.
期刊介绍：
The Journal of Pain and Symptom Management is an internationally respected, peer-reviewed journal and serves an interdisciplinary audience of professionals by providing a forum for the publication of the latest clinical research and best practices related to the relief of illness burden among patients afflicted with serious or life-threatening illness.
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