What Limits Pediatric Oncology Trial Access for Marginalized Families?

Black and Hispanic parents of children with cancer reported high trust in their oncology teams and a willingness to participate in clinical trials when offered, while their clinicians more often cited household material hardship (HMH) and the experimental nature of trials as barriers to enrollment, according to a cross-sectional study published in JAMA Network Open.¹ The findings, publicized in a news release from UT Southwestern Medical Center, point to gatekeeping and unaddressed material hardship as key targets for improving equitable trial access.²

What did the study show about barriers and facilitators to trial participation?

Investigators surveyed 60 parents of Black and Hispanic children with cancer and interviewed a subset of 20. Fifteen pediatric oncology clinicians were also interviewed, all from a single large pediatric cancer center in Boston, Massachusetts.

Of the 60 families, 28 (47%) were offered to enroll in a clinical trial, and of them, 25 (89%) enrolled. Twenty families (33%) had children actively participating in a clinical trial at the time of study participation. Regarding reasons for inclusion, patients noted treatment as being less intensive or having fewer potential late effects and because trials offered opportunities for novel therapies or moving effective therapies into earlier lines.

Parents and clinicians identified 2 facilitators to trial participation: altruism and trustworthiness. Parents reported high trust in their oncology team, with a mean score of 4.65 out of 5.00 on the Trust in Oncologist scale.

Both groups also converged on several barriers. The informed consent discussion emerged as a particular pain point: despite most parents (85%) reporting high confidence filling out medical forms, many described feeling rushed at a moment when they were still absorbing their child‘s diagnosis. Parents suggested breaking the consent conversation into multiple sessions and using a planned follow-up to answer questions, rather than requiring same-day decisions. Clinicians agreed the discussion was overwhelming, particularly at diagnosis, and said they tried to limit medical jargon and use transparent communication to help families process the information.

Trial materials were also cited as a barrier by both groups. Parents said dense, text-heavy consent documents were hard to absorb and suggested simplified formats with more visuals, diagrams, or verbal explanations to accommodate different learning styles. Clinicians pointed to a lack of basic educational materials explaining what a clinical trial is in general, apart from the specific consent forms, and described existing consent documents as lengthy and laden with legal language regardless of a family‘s education level.

Families who preferred a language other than English, who made up 42% of the parent cohort, faced compounding challenges. Parents and clinicians both noted that information sharing during consent discussions was harder for these families, and multiple clinicians pointed to the absence of translated consent materials as a specific gap. Experiences with interpreters varied; some parents found them helpful, while others felt interpreters missed important context. Clinicians observed that consent discussions tended to run longer with interpreters and that remote interpretation was often less effective than having an interpreter in the room.

Where did parent and clinician perspectives diverge?

Most parents (73%) reported at least 1 domain of HMH, including food, housing, transportation, or utility insecurity. Despite this prevalence, no parents explicitly identified HMH as a barrier to trial participation; instead, many described a willingness to do whatever was necessary for their child‘s care. Clinicians, by contrast, characterized HMH and the experimental nature of trials as significant barriers for Black and Hispanic families. Clinicians also identified gatekeeping, in which trials were not offered to medically eligible families based on assumptions about willingness or ability to adhere to study requirements, as a systems-level barrier that parent interviews did not raise.

“Our findings highlight that historically marginalized parents are very willing to participate in clinical trials, if offered,” stated Puja Umaretiya, MD, MS, assistant professor of pediatrics and a member of the Population Science and Cancer Control Research Program in the Harold C. Simmons Comprehensive Cancer Center at UT Southwestern Medical Center, and the study‘s lead author, in the press release.² “Efforts to reduce clinician gatekeeping—where doctors decide not to offer clinical trials based on assumptions—and address material hardship are needed to improve equitable participation.”

What was the study design?

The explanatory sequential mixed-methods study enrolled parents of Black and Hispanic children younger than 18 years who were 6 weeks post diagnosis to 1 year off therapy at Dana-Farber Cancer Institute/Boston Children‘s Hospital. Parents completed a 66-item survey in English or Spanish, and a purposively sampled subset completed semistructured interviews from September to December 2021. Clinicians, including 12 attendings and 3 advanced practice practitioners, completed interviews from February to March 2022. Data were analyzed from April 2022 to October 2025.

Why does equitable trial participation matter in pediatric oncology?

Survival for children with cancer has improved from less than 10% to more than 85% over the past 75 years, aided in part by cooperative group clinical trials, but Black and Hispanic children continue to experience worse survival than White children.

“Equitable clinical trial participation is important because it ensures that our research is generalizable, identifies mechanisms that may drive worse outcomes for certain populations, and improves the trustworthiness of the medical system,” Umaretiya stated in the press release.²

The study authors proposed standardizing trial eligibility screening to reduce clinician-level gatekeeping and implementing systematic HMH screening to identify families who need financial or resource support, particularly at inflection points such as relapse. The authors noted the single-center design, conducted at an academic center with a national reputation for pediatric cancer care, may limit the generalizability of the findings.

References

1. Umaretiya PJ, Paul MA, Valenzuela A, et al. Pediatric oncology clinical trial participation among families from historically marginalized groups. JAMA Netw Open. 2026;9(7):e2626538. doi:10.1001/jamanetworkopen.2026.26538
2. How to boost enrollment of Black, Hispanic patients in pediatric clinical trials. News release. UT Southwestern Medical Center. July 31, 2026. Accessed August 5, 2026. https://tinyurl.com/t5zh6trx