Research Burden in Pediatric Cancer: A Mixed Methods Study From the PediQUEST Response Trial.
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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.