Nicolette Juliana Rodriguez, Tara B Coffin, Andrew J Ward, Juan Felipe Rodriguez, Chinedu Ukaegbu, Allison Rosenzweig, Alyson Caruso, Anna Revette, Barbara Kenner, Scott H Nelson, Michael Goggins, Anirban Maitra, Sapna Syngal
{"title":"评估黑人和拉丁美洲/ A人胰腺癌患者癌症遗传学护理障碍和促进因素的混合方法：遗传教育、风险评估和测试（再生）研究中的种族/民族平等。","authors":"Nicolette Juliana Rodriguez, Tara B Coffin, Andrew J Ward, Juan Felipe Rodriguez, Chinedu Ukaegbu, Allison Rosenzweig, Alyson Caruso, Anna Revette, Barbara Kenner, Scott H Nelson, Michael Goggins, Anirban Maitra, Sapna Syngal","doi":"10.1007/s10620-025-09018-7","DOIUrl":null,"url":null,"abstract":"<p><strong>Purpose: </strong>Pancreatic ductal adenocarcinoma (PDAC) disproportionately impacts Black and Latino/a communities, who are less likely to receive genetic counseling/testing referrals, hindering early cancer detection/prevention access. This study aims to determine the barriers/facilitators to PDAC genetics care/surveillance among Black and Latino/a populations.</p><p><strong>Methods: </strong>This is a concurrent mixed-methods study that utilized electronic surveys and semi-structured focus groups/in-depth interviews (02/14/2022-12/21/2022). This was a volunteer sample of Black or Latino/a general participants with a personal or family history of PDAC and community leaders serving these groups. Participants discussed barriers/facilitators to PDAC cancer genetics care/surveillance. Health literacy, cancer worry, medical trust, and inherited cancer risk were assessed using electronic surveys. Discussions were recorded, transcribed, and analyzed using a content analysis approach. Chi-square tests, two-sample t-tests, and one-way analysis of variance were used to evaluate survey data using R v4.3.2.</p><p><strong>Results: </strong>55 participants (n = 27 general participants, 28 leaders) completed surveys. 27 (49%) self-identified as Black and 23 (42%) as Latino/a. Leaders (74%) reported higher levels of perceived medical mistrust among their communities than general participants (Trust in Physician Scale mean/SD 29.9/4.2 vs. 38.4/5.2, p < 0.001; Medical Mistrust Index = 18.8/4.2 vs. 24.4/3.6; p < 0.001, respectively). General participants self-reported higher digital health seeking capabilities than leaders' perception of that skillset (p < 0.001). 24 of these participants completed a focus group/in-depth interview, emphasizing informed discussions with a trusted/established provider.</p><p><strong>Conclusions: </strong>Individuals impacted by PDAC are open to genetics care and desire resources to promote PDAC surveillance. It is also crucial that leaders and providers be engaged to facilitate access to this care.</p>","PeriodicalId":11378,"journal":{"name":"Digestive Diseases and Sciences","volume":" ","pages":""},"PeriodicalIF":2.5000,"publicationDate":"2025-04-27","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":"0","resultStr":"{\"title\":\"A Mixed-Methods Approach to Assessing Barriers and Facilitators to Cancer Genetics Care in Black and Latino/a Individuals Impacted by Pancreatic Cancer: The Racial/ethnic Equity in GENetic Education, Risk Assessment, and TEsting (REGENERATE) Study.\",\"authors\":\"Nicolette Juliana Rodriguez, Tara B Coffin, Andrew J Ward, Juan Felipe Rodriguez, Chinedu Ukaegbu, Allison Rosenzweig, Alyson Caruso, Anna Revette, Barbara Kenner, Scott H Nelson, Michael Goggins, Anirban Maitra, Sapna Syngal\",\"doi\":\"10.1007/s10620-025-09018-7\",\"DOIUrl\":null,\"url\":null,\"abstract\":\"<p><strong>Purpose: </strong>Pancreatic ductal adenocarcinoma (PDAC) disproportionately impacts Black and Latino/a communities, who are less likely to receive genetic counseling/testing referrals, hindering early cancer detection/prevention access. This study aims to determine the barriers/facilitators to PDAC genetics care/surveillance among Black and Latino/a populations.</p><p><strong>Methods: </strong>This is a concurrent mixed-methods study that utilized electronic surveys and semi-structured focus groups/in-depth interviews (02/14/2022-12/21/2022). This was a volunteer sample of Black or Latino/a general participants with a personal or family history of PDAC and community leaders serving these groups. Participants discussed barriers/facilitators to PDAC cancer genetics care/surveillance. Health literacy, cancer worry, medical trust, and inherited cancer risk were assessed using electronic surveys. Discussions were recorded, transcribed, and analyzed using a content analysis approach. Chi-square tests, two-sample t-tests, and one-way analysis of variance were used to evaluate survey data using R v4.3.2.</p><p><strong>Results: </strong>55 participants (n = 27 general participants, 28 leaders) completed surveys. 27 (49%) self-identified as Black and 23 (42%) as Latino/a. Leaders (74%) reported higher levels of perceived medical mistrust among their communities than general participants (Trust in Physician Scale mean/SD 29.9/4.2 vs. 38.4/5.2, p < 0.001; Medical Mistrust Index = 18.8/4.2 vs. 24.4/3.6; p < 0.001, respectively). General participants self-reported higher digital health seeking capabilities than leaders' perception of that skillset (p < 0.001). 24 of these participants completed a focus group/in-depth interview, emphasizing informed discussions with a trusted/established provider.</p><p><strong>Conclusions: </strong>Individuals impacted by PDAC are open to genetics care and desire resources to promote PDAC surveillance. It is also crucial that leaders and providers be engaged to facilitate access to this care.</p>\",\"PeriodicalId\":11378,\"journal\":{\"name\":\"Digestive Diseases and Sciences\",\"volume\":\" \",\"pages\":\"\"},\"PeriodicalIF\":2.5000,\"publicationDate\":\"2025-04-27\",\"publicationTypes\":\"Journal Article\",\"fieldsOfStudy\":null,\"isOpenAccess\":false,\"openAccessPdf\":\"\",\"citationCount\":\"0\",\"resultStr\":null,\"platform\":\"Semanticscholar\",\"paperid\":null,\"PeriodicalName\":\"Digestive Diseases and Sciences\",\"FirstCategoryId\":\"3\",\"ListUrlMain\":\"https://doi.org/10.1007/s10620-025-09018-7\",\"RegionNum\":4,\"RegionCategory\":\"医学\",\"ArticlePicture\":[],\"TitleCN\":null,\"AbstractTextCN\":null,\"PMCID\":null,\"EPubDate\":\"\",\"PubModel\":\"\",\"JCR\":\"Q2\",\"JCRName\":\"GASTROENTEROLOGY & HEPATOLOGY\",\"Score\":null,\"Total\":0}","platform":"Semanticscholar","paperid":null,"PeriodicalName":"Digestive Diseases and Sciences","FirstCategoryId":"3","ListUrlMain":"https://doi.org/10.1007/s10620-025-09018-7","RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":null,"EPubDate":"","PubModel":"","JCR":"Q2","JCRName":"GASTROENTEROLOGY & HEPATOLOGY","Score":null,"Total":0}
A Mixed-Methods Approach to Assessing Barriers and Facilitators to Cancer Genetics Care in Black and Latino/a Individuals Impacted by Pancreatic Cancer: The Racial/ethnic Equity in GENetic Education, Risk Assessment, and TEsting (REGENERATE) Study.
Purpose: Pancreatic ductal adenocarcinoma (PDAC) disproportionately impacts Black and Latino/a communities, who are less likely to receive genetic counseling/testing referrals, hindering early cancer detection/prevention access. This study aims to determine the barriers/facilitators to PDAC genetics care/surveillance among Black and Latino/a populations.
Methods: This is a concurrent mixed-methods study that utilized electronic surveys and semi-structured focus groups/in-depth interviews (02/14/2022-12/21/2022). This was a volunteer sample of Black or Latino/a general participants with a personal or family history of PDAC and community leaders serving these groups. Participants discussed barriers/facilitators to PDAC cancer genetics care/surveillance. Health literacy, cancer worry, medical trust, and inherited cancer risk were assessed using electronic surveys. Discussions were recorded, transcribed, and analyzed using a content analysis approach. Chi-square tests, two-sample t-tests, and one-way analysis of variance were used to evaluate survey data using R v4.3.2.
Results: 55 participants (n = 27 general participants, 28 leaders) completed surveys. 27 (49%) self-identified as Black and 23 (42%) as Latino/a. Leaders (74%) reported higher levels of perceived medical mistrust among their communities than general participants (Trust in Physician Scale mean/SD 29.9/4.2 vs. 38.4/5.2, p < 0.001; Medical Mistrust Index = 18.8/4.2 vs. 24.4/3.6; p < 0.001, respectively). General participants self-reported higher digital health seeking capabilities than leaders' perception of that skillset (p < 0.001). 24 of these participants completed a focus group/in-depth interview, emphasizing informed discussions with a trusted/established provider.
Conclusions: Individuals impacted by PDAC are open to genetics care and desire resources to promote PDAC surveillance. It is also crucial that leaders and providers be engaged to facilitate access to this care.
期刊介绍：
Digestive Diseases and Sciences publishes high-quality, peer-reviewed, original papers addressing aspects of basic/translational and clinical research in gastroenterology, hepatology, and related fields. This well-illustrated journal features comprehensive coverage of basic pathophysiology, new technological advances, and clinical breakthroughs; insights from prominent academicians and practitioners concerning new scientific developments and practical medical issues; and discussions focusing on the latest changes in local and worldwide social, economic, and governmental policies that affect the delivery of care within the disciplines of gastroenterology and hepatology.
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