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.

Autor: Santacroce SJ; University of North Carolina at Chapel Hill School of Nursing, Chapel Hill, North Carolina, USA., Beauchemin MP; Columbia University Mailman School of Nursing, New York, New York, USA., Pelletier W; University of Calgary, Calgary, Alberta, Canada., Robles JM; Wake Forest University School of Medicine, Winston-Salem, North Carolina, USA., Ruiz J; University of Pittsburgh School of Medicine, Pittsburgh, Pennsylvania, USA., Blazin LJ; Indiana University School of Medicine, Indianapolis, Indiana, USA.; Riley Children's Health, Indianapolis, Indiana, USA., Aristizabal P; University of California San Diego Moores Cancer Center/University of California San Diego Department of Pediatrics, Rady Children's Hospital San Diego, San Diego, California, USA., Orjuela-Grimm M; New York Presbyterian/Columbia University Medical Center, New York, New York, USA., Hall AG; University of Washington, Seattle Children's Hospital, Seattle, Washington, USA., Kahn J; New York Presbyterian/Columbia University Medical Center, New York, New York, USA., Kline C; Children's Hospital of Philadelphia, Philadelphia, Pennsylvania, USA., Seif AE; Children's Hospital of Philadelphia, Philadelphia, Pennsylvania, USA., Velez MC; Children's Hospital New Orleans/Louisiana State University Health Sciences Center, New Orleans, Louisiana, USA., Winestone LE; Division of Allergy, Immunology & BMT, University of California San Francisco Benioff Children's Hospitals, San Francisco, California, USA.
Jazyk: angličtina
Zdroj: Pediatric blood & cancer [Pediatr Blood Cancer] 2024 Nov; Vol. 71 (11), pp. e31321. Date of Electronic Publication: 2024 Sep 05.
DOI: 10.1002/pbc.31321
Abstrakt: Background: 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.
Procedures: 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 (IRB) 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.
Results: A total of 139 (N = 230; 60%) institutions returned the survey. Respondents were mainly physician principal investigators (n = 79/139; 57%) at the United States sites (n = 118/139; 85%) serving less than 100 newly diagnosed children per year (n = 99/139, 71%). They described challenges at multiple levels. Proposed approaches to improvements included centralized provision of translated materials and video educational materials in various languages, and collaborating with IRBs on regulatory processes that protect families and facilitate equitable clinical trial access.
Conclusions: Clinical trial consortia, such as COG, face challenges in enrolling representative samples. Further research is required to design and implement multilevel interventions to ensure equitable access for all, regardless of language used, and mitigate disparate research participation.
(© 2024 Wiley Periodicals LLC.)
Databáze: MEDLINE
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