Santacroce SJ, Beauchemin MP, Pelletier W, Robles JM, Ruiz J, Blazin LJ, Aristizabal P, Orjuela-Grimm M, Hall AG, Kahn J, Kline C, Seif AE, Velez MC, Winestone LE. Multilevel challenges to equitable inclusion of children in trials when parents use languages other than English: A qualitative report from Children’s Oncology Group’s Diversity and Health Disparities Committee Language Equity Working Group. Pediatr Blood Cancer. 2024 Nov;71(11):e31321. doi: 10.1002/pbc.31321. Epub 2024 Sep 5. PMID: 39238140; PMCID: PMC12010362.
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Abstract
Increasing representation in clinical trials is a priority for the National Cancer Institute and Children’s Oncology Group (COG). Our survey of COG-affiliated institutions revealed that many sites have insufficient processes and resources to enroll children whose parents use languages other than English (LOE). We describe reported barriers and facilitators to enrolling children in clinical trials when parents use LOE and propose opportunities for improvement. We sent a 20-item survey to COG-affiliated institutions. Five items allowed respondents to expand on replies to questions about (a) local institutional review board requirements regarding translation of consent documents, (b) contributors to provider discomfort consenting parents who use LOE, (c) available language services and resources, and (d) barriers to enrolling children whose parents use LOE or offer ideas about approaches to improvements. Two pairs of researchers independently coded free text responses and compared results for concordance.