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

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.