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| Format: | Artículo Open Access |
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Wiley
2024
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| Online Access: | https://onlinelibrary.wiley.com/doi/10.1002/pbc.31321 |
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| author | Sheila Judge Santacroce Melissa P. Beauchemin Wendy Pelletier Joanna M. Robles Jenny Ruiz Lindsay J. Blazin Paula Aristizabal Manuela Orjuela‐Grimm Anurekha G. Hall Justine Kahn Cassie Kline Alix E. Seif Maria C. Velez Lena E. Winestone |
| author_facet | Sheila Judge Santacroce Melissa P. Beauchemin Wendy Pelletier Joanna M. Robles Jenny Ruiz Lindsay J. Blazin Paula Aristizabal Manuela Orjuela‐Grimm Anurekha G. Hall Justine Kahn Cassie Kline Alix E. Seif Maria C. Velez Lena E. Winestone Sheila Judge Santacroce Melissa P. Beauchemin Wendy Pelletier Joanna M. Robles Jenny Ruiz Lindsay J. Blazin Paula Aristizabal Manuela Orjuela‐Grimm Anurekha G. Hall Justine Kahn Cassie Kline Alix E. Seif Maria C. Velez Lena E. Winestone |
| collection | Wiley Open Access |
| contents | 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 Sheila Judge Santacroce Melissa P. Beauchemin Wendy Pelletier Joanna M. Robles Jenny Ruiz Lindsay J. Blazin Paula Aristizabal Manuela Orjuela‐Grimm Anurekha G. Hall Justine Kahn Cassie Kline Alix E. Seif Maria C. Velez Lena E. Winestone Pediatric Blood & Cancer AbstractBackgroundIncreasing 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.ProceduresWe 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.ResultsA 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.ConclusionsClinical 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. 10.1002/pbc.31321 http://onlinelibrary.wiley.com/termsAndConditions#vor |
| doi_str_mv | 10.1002/pbc.31321 |
| format | Artículo Open Access |
| id | wiley_oa_10_1002_pbc_31321 |
| institution | Wiley Open Access |
| license_str_mv | http://onlinelibrary.wiley.com/termsAndConditions#vor |
| publishDate | 2024 |
| publisher | Wiley |
| record_format | wiley_oa |
| spellingShingle | 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 Sheila Judge Santacroce Melissa P. Beauchemin Wendy Pelletier Joanna M. Robles Jenny Ruiz Lindsay J. Blazin Paula Aristizabal Manuela Orjuela‐Grimm Anurekha G. Hall Justine Kahn Cassie Kline Alix E. Seif Maria C. Velez Lena E. Winestone Pediatric Blood & Cancer 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 Sheila Judge Santacroce Melissa P. Beauchemin Wendy Pelletier Joanna M. Robles Jenny Ruiz Lindsay J. Blazin Paula Aristizabal Manuela Orjuela‐Grimm Anurekha G. Hall Justine Kahn Cassie Kline Alix E. Seif Maria C. Velez Lena E. Winestone Pediatric Blood & Cancer AbstractBackgroundIncreasing 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.ProceduresWe 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.ResultsA 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.ConclusionsClinical 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. 10.1002/pbc.31321 http://onlinelibrary.wiley.com/termsAndConditions#vor |
| title | 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 |
| topic | Pediatric Blood & Cancer |
| url | https://onlinelibrary.wiley.com/doi/10.1002/pbc.31321 |