TOPLINE

Black and Hispanic parents of children with cancer reported high trust in oncology teams and willingness to participate in clinical trials despite household material hardship (HMH), which affected more than 70% of families. Clinicians, however, perceived HMH and distrust of experimentation as significant barriers, leading some to withhold trial offers from families they believed could not adhere to requirements — a practice known as gatekeeping.

METHODOLOGY

• Some studies suggest disparate trial enrollment with Black and Hispanic children enrolling at lower rates than White children, while others suggest proportional enrollment across race and ethnicity. No contemporary pediatric oncology studies have focused on Black and Hispanic families’ perspectives regarding research participation, creating a gap in understanding the specific barriers and facilitators to clinical trial enrollment among these historically marginalized groups.
• Researchers conducted a single-center cross-sectional study with an explanatory sequential mixed-methods design at a large pediatric cancer center in Boston, enrolling 60 parents of Black and Hispanic children with cancer and 15 pediatric oncology clinicians from September 2021 to March 2022.
• Parents completed single-timepoint surveys covering sociodemographic characteristics, health literacy, social support, HMH, clinical trial participation, decisional regret, trust in oncologist, group-based medical mistrust, everyday experiences of discrimination, and future study participation. Clinicians, including 12 attendings and 3 advanced practice practitioners, completed semistructured interviews and brief demographic surveys. Interview guides for both parents and clinicians focused on experiences with clinical trials, barriers and facilitators to participation, trust, and HMH.
• Quantitative data were summarized descriptively, and interview transcripts were analyzed using thematic analysis after 20 parent interviews and 15 clinician interviews; data were integrated along key domains to identify barriers and facilitators at patient, clinician, and systems levels.
• Electronic medical record data included child race and ethnicity, diagnosis and date, disease type, treatment, and whether the child was ever offered, ever enrolled, or currently on a clinical trial. Analysis was conducted from April 2022 to October 2025.

TAKEAWAY

• Parents and clinicians thematically converged on altruism and trustworthiness as facilitators to clinical trial participation, and on barriers including the informed consent discussion, preference for language other than English, trial materials, and study requirements.
• Parents quantitatively reported high trust in their oncology teams with a mean score of 4.65 (SD, 0.65) on the Trust in Oncologist scale, where 5 indicates complete trust, and most parents (51 [85%]) reported high confidence filling out medical forms.
• Despite 44 parents (73%) reporting at least one domain of HMH — including housing insecurity (29), food insecurity (25), utilities insecurity (15), and transportation insecurity (15) — no parents explicitly identified HMH as a barrier to trial participation.
• According to the authors, clinician-identified gatekeeping practices, where trials were not offered to all medically eligible patients based on perceived family willingness or ability to adhere to requirements, were intricately tied to assumptions about families’ financial or resource needs.

IN PRACTICE

“Next steps include standardization of trial eligibility screening and systematic HMH screening and support to reduce gatekeeping,” the authors of the study wrote.

In an invited commentary published in JAMA Network Open, Anurekha G. Hall, MD, MS, wrote: “This study was conducted at a single, high-reputation academic center, with a group of parents with high health literacy — a setting that may have contributed to the high trust scores and may not reflect the experiences of families receiving care in settings where resource support structures differ. Despite these limitations, these findings challenge the field to interrogate whose assumptions are shaping trial access. The path toward equitable pediatric oncology trial enrollment requires not only a redesign of clinical trial infrastructure and the informed consent process but also a recalibration of clinician assumptions about what families from historically marginalized groups want for their children.”

SOURCE

The study was led by Puja J. Umaretiya, MD, MS, of the University of Texas Southwestern Medical Center in Dallas. It was published online on July 31 in JAMA Network Open.

LIMITATIONS

The study was conducted at a single academic center with a national reputation for pediatric cancer care, which may limit broad generalizability of these findings and may have influenced findings regarding high parent trust. The analysis focused on barriers and facilitators to clinical trial participation after families had already accessed care at a site offering frontline and early-phase trials and thus may not identify barriers to accessing centers. Eligible parents were identified using electronic medical record-reported child race and ethnicity, which may have missed eligible participants. Participants in the study may be at risk of sampling bias and could be more likely to view research participation favorably, although this is likely mitigated by the 94% parent participation rate.

DISCLOSURES

This study received support from a Pedals 4 Pediatrics grant from Dana-Farber Cancer Institute. Umaretiya disclosed receiving salary support from the National Institutes of Health and grants from St Baldrick’s, the Conquer Cancer Foundation, and the National Institutes of Health outside the submitted work. Sandi L. Pruitt, PhD, MPH, disclosed receiving consulting fees from Pfizer and Gilead outside the present work. Additional disclosures are noted in the original article.

This article was created using several editorial tools, including AI, as part of the process. Human editors reviewed this content before publication.