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Research Burden in Pediatric Cancer: A Mixed Methods Study From the PediQUEST Response Trial
Erika Tsuchiyose1, Deborah Feifer2, Alexandra F Merz3
1Tufts University School of Medicine (E.T.), Boston, Massachusetts, USA.
Insights
Study burden in pediatric advanced cancer trials is often low to moderate. However, families facing social disparities, including historically marginalized (HM) or economic hardship (EH) backgrounds, experience significantly higher burdens.
Area of Science:
- Pediatric Oncology
- Clinical Trial Research
- Health Disparities
Background:
- The research burden on families with children in advanced cancer studies is not well understood.
- Understanding this burden is crucial for improving trial participation and support.
Purpose of the Study:
- To assess study-related burden in parents and children within the PediQUEST Response Trial.
- To investigate factors associated with this burden, specifically focusing on historically marginalized (HM) and economic hardship (EH) statuses.
Main Methods:
- A mixed-methods secondary analysis of data from a randomized controlled trial (RCT) involving 154 dyads.
- Thematic analysis of parent and child interviews identified burden sources.
- A six-level burden variable integrated qualitative data and quantitative dropout status.
- Ordinal logistic regression explored associations between social disparities (HM/EH) and burden levels.
Main Results:
- Most families reported low to moderate burden (levels 0-3), with approximately 20% experiencing high burden (levels 4-5).
- Parental burden significantly increased with greater social disparity (cumulative ORs 2.3-4.9).
- No significant association was found between social disparity and child's study burden.
Conclusions:
- While overall study burden is manageable, social disparities exacerbate it for parents in pediatric advanced cancer trials.
- Developing targeted support strategies is essential to enhance diversity and inclusivity in pediatric cancer research.
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.
Clinicaltrials:
gov NCT03408314.
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