JAMA Netw Open. 2026 Jul 1;9(7):e2626538. doi: 10.1001/jamanetworkopen.2026.26538.
ABSTRACT
IMPORTANCE: Perspectives of families from historically marginalized groups regarding pediatric oncology clinical trial participation are not well-represented in the literature.
OBJECTIVE: To describe clinician- and parent-perceived facilitators and barriers to clinical trial participation.
DESIGN, SETTING, AND PARTICIPANTS: This single-center cross-sectional study with an explanatory sequential mixed-methods design enrolled parents of Black and Hispanic children with cancer as well as pediatric oncology clinicians from a large pediatric cancer center in Boston, Massachusetts. Parent participants completed single-time point surveys, and a subset, purposively sampled based on self-identified race and ethnicity, language, and household material hardship (HMH; ie, food, housing, transportation, or utility insecurity), completed semistructured interviews from September to December 2021. Clinicians completed semistructured interviews from February to March 2022. Data were analyzed from April 2022 to October 2025.
MAIN OUTCOMES AND MEASURES: Key factors influencing clinical trial participation in pediatric oncology among parents from historically marginalized groups. Quantitative data were summarized descriptively. Interview transcripts were analyzed using thematic analysis and integrated along key domains.
RESULTS: A total of 60 parents completed the questionnaire; self-identified race and ethnicity included 5 Hispanic Black (8%), 10 Hispanic White (17%), 21 Hispanic other (35%), 21 non-Hispanic Black (35%), and 3 non-Hispanic White (5%) parents; most were mothers (51 [85%]). Twenty parents participated in interviews. Fifteen clinicians (10 [67%] female participants; 10 [67%] with ≥10 years caring for children with cancer) were interviewed, including 12 (80%) attendings and 3 (20%) advanced practice practitioners; most identified as non-Hispanic White (14 [93%]). Most families experienced HMH (44 [73%]) and reported high trust in their oncology team (mean [SD] score, 4.63 [0.65] of 5.00). Qualitatively, parents and clinicians aligned in identifying altruism and trustworthiness as facilitators to trial participation, while the informed consent discussion, non-English language preference, trial materials, and study requirements were participation barriers. Unlike clinicians, parents did not identify HMH or the experimental nature of trials as significant barriers to participation. Parents identified the desire for representation as a facilitator to participation, and clinicians identified gatekeeping as a barrier.
CONCLUSIONS AND RELEVANCE: In this cross-sectional study of pediatric oncology families from historically marginalized groups and clinicians, clinician- and parent-perceived barriers identified opportunities to increase equitable trial participation. Next steps include standardization of trial eligibility screening and systematic HMH screening and support to reduce gatekeeping.
PMID:42536371 | DOI:10.1001/jamanetworkopen.2026.26538
