Caregiver Perspectives on Patient Participation in Biological Pediatric Cancer Research

Area of Science:

• Pediatric Oncology
• Clinical Research Ethics
• Cancer Biology

Background:

• Adolescent cancer patients and caregivers show willingness for invasive biological sampling.
• Limited data exists on the willingness of caregivers for prepubescent cancer patients to participate in such studies.
• Many childhood malignancies occur in younger age groups.

Purpose of the Study:

• To assess the willingness of caregivers to consent to research studies involving invasive biological sampling in children aged 13 years and younger.
• To understand caregiver consent patterns for pediatric cancer research involving biological samples.
• To evaluate caregiver attitudes towards invasive procedures with and without direct clinical benefit for their children.

Main Methods:

• A survey was administered to caregivers of pediatric cancer patients (≤ 13 years).
• The survey assessed willingness to consent to various invasive procedures for research purposes.
• Procedures were evaluated both with and without potential direct clinical benefit to the child.

Main Results:

• High willingness (95.6%) was observed for additional blood draws, irrespective of direct clinical benefit.
• A majority of caregivers were willing to allow additional biopsies for research, though willingness decreased with invasiveness.
• Interest in research participation remained above 50% even for more invasive procedures without direct benefit.

Conclusions:

• Caregivers of young children with cancer are amenable to their children undergoing additional invasive procedures for research.
• Willingness for invasive procedures in pediatric cancer research is influenced by the level of invasiveness and direct benefit.
• Future biological and correlative studies should actively approach caregivers of young cancer patients for consent and participation.