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Identifying caregiver-reported modifiable barriers to pediatric oncology clinical trial enrollment and participation

Rebecca Whitmire1,2, Daniel Wikstrom3, Robin Lockridge3

  • 1Division of Pediatric Hematology/Oncology, University of Maryland Golisano Children's Hospital, 22 S Greene Street, Baltimore, MD, 21201, USA. rwhitmire@som.umaryland.edu.

Supportive Care in Cancer : Official Journal of the Multinational Association of Supportive Care in Cancer
|June 17, 2026
PubMed

Insights

Socioeconomic status, household material hardship, and low health literacy create barriers to pediatric cancer clinical trial participation. Addressing these modifiable factors can improve trial access and reduce outcome disparities.

Area of Science:

  • Pediatric Oncology
  • Health Disparities Research
  • Clinical Trial Enrollment

Background:

  • Clinical trial (ClTr) participation is vital for advancing pediatric oncology care.
  • Significant sociodemographic disparities exist in pediatric cancer ClTr enrollment.
  • Identifying modifiable barriers like household material hardship (HMH) and health literacy (HL) is crucial for improving ClTr access.

Purpose of the Study:

  • To compare caregiver-reported barriers to pediatric oncology ClTr participation across socioeconomic status (SES) and racial/ethnic groups.
  • To explore the associations among caregiver HL, HMH, and barriers to ClTr participation.

Main Methods:

  • A nationwide anonymous online survey was administered to caregivers of children diagnosed with cancer within the last 5 years.
  • Caregivers completed the Research Participation Survey - Caregiver (RPS-C), Health Literacy Survey-12 (HLS-12), and WellRx questionnaire.
  • Survey data were analyzed to compare barrier scores across SES and racial/ethnic groups and to assess associations with HL and HMH.

Main Results:

  • 64% of 59 participants were socioeconomically under-resourced, and 52.5% were racially/ethnically underrepresented.
  • Under-resourced caregivers reported significantly higher barriers to ClTr participation compared to adequately resourced caregivers (p=0.001).
  • Lower HL (rho=-0.51, p<0.001) and higher HMH (rho=0.57, p<0.001) were associated with increased reported barriers, with >90% citing difficulty understanding study risks.

Conclusions:

  • Socioeconomically under-resourced status, household material hardship, and lower health literacy are associated with increased barriers to pediatric cancer ClTr participation.
  • These findings highlight modifiable barriers that can be targeted for interventions.
  • Interventions aimed at these barriers may improve ClTr participation and reduce disparities in childhood cancer outcomes.
Abstract

Keywords:
Clinical trialsHealth disparitiesHousehold material hardshipPediatric oncology

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