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Purpose <p>Clinical trial (ClTr) participation is critical to high-quality pediatric oncology care, but significant sociodemographic disparities in trial enrollment exist. Identifying modifiable barriers to participation such as household material hardship (HMH) and limited health literacy (HL) is essential to improving ClTr access. We compared differences in caregiver-reported barriers to pediatric oncology ClTr participation across socioeconomic status (SES) and racial and ethnic groups through a nationwide anonymous online survey of caregivers of children with cancer. We also explored associations among caregiver HL, HMH, and barriers to trial participation.</p> Methods <p>English- and/or Spanish-speaking caregivers of children diagnosed with cancer in the last 5&#xa0;years completed the Research Participation Survey – Caregiver (RPS-C) assessing caregiver-reported barriers to ClTr participation, the validated Health Literacy Survey-12 (HLS<sub>19</sub>-Q12) assessing HL, and the WellRx questionnaire measuring unmet needs.</p> Results <p>Of 59 participants, 64% were socioeconomically under-resourced, 52.5% identified as racially or ethnically underrepresented per NIH&#xa0;criteria, and 62% reported their child had not participated in a ClTr. Under-resourced caregivers reported higher RPS-C barrier scores than adequately resourced caregivers (<i>z</i> = 3.18, <i>p</i> = 0.001). There were no significant differences in barrier scores across underrepresented vs represented racial and ethnic groups (<i>p</i> = 0.069). Lower HL (rho = −0.51, <i>p</i> &lt; 0.001) and higher HMH (rho = 0.57, <i>p</i> &lt; 0.001) were associated with higher barrier scores. The most frequently identified barrier was difficulty understanding study risks (&gt; 90%).</p> Conclusions <p>Under-resourced SES, HMH, and lower HL were associated with increased reported barriers to ClTr participation. Caregivers reported modifiable barriers that could be targets for intervention to improve ClTr participation and reduce disparities in childhood cancer outcomes.</p>

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

  • 期刊论文

  • 发表日期：

    2026年6月17日

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  • Rebecca Whitmire,
  • Daniel Wikstrom,
  • Robin Lockridge,
  • Elizabeth Holland,
  • Angelina Van Sprang,
  • Mary Anne Toledo-Tamula,
  • Srivandana Akshintala,
  • Rosandra N. Kaplan,
  • Pamela L. Wolters,
  • Staci Martin

摘要

Purpose

Clinical trial (ClTr) participation is critical to high-quality pediatric oncology care, but significant sociodemographic disparities in trial enrollment exist. Identifying modifiable barriers to participation such as household material hardship (HMH) and limited health literacy (HL) is essential to improving ClTr access. We compared differences in caregiver-reported barriers to pediatric oncology ClTr participation across socioeconomic status (SES) and racial and ethnic groups through a nationwide anonymous online survey of caregivers of children with cancer. We also explored associations among caregiver HL, HMH, and barriers to trial participation.

Methods

English- and/or Spanish-speaking caregivers of children diagnosed with cancer in the last 5 years completed the Research Participation Survey – Caregiver (RPS-C) assessing caregiver-reported barriers to ClTr participation, the validated Health Literacy Survey-12 (HLS19-Q12) assessing HL, and the WellRx questionnaire measuring unmet needs.

Results

Of 59 participants, 64% were socioeconomically under-resourced, 52.5% identified as racially or ethnically underrepresented per NIH criteria, and 62% reported their child had not participated in a ClTr. Under-resourced caregivers reported higher RPS-C barrier scores than adequately resourced caregivers (z = 3.18, p = 0.001). There were no significant differences in barrier scores across underrepresented vs represented racial and ethnic groups (p = 0.069). Lower HL (rho = −0.51, p < 0.001) and higher HMH (rho = 0.57, p < 0.001) were associated with higher barrier scores. The most frequently identified barrier was difficulty understanding study risks (> 90%).

Conclusions

Under-resourced SES, HMH, and lower HL were associated with increased reported barriers to ClTr participation. Caregivers reported modifiable barriers that could be targets for intervention to improve ClTr participation and reduce disparities in childhood cancer outcomes.