Racial and Ethnic Disparities in Genomic Healthcare Utilization, Patient Activation, and Intrafamilial Communication of Risk among Females Tested for BRCA Variants: A Mixed Methods Study.
Racial and Ethnic Disparities in Genomic Healthcare Utilization, Patient Activation, and Intrafamilial Communication of Risk among Females Tested for BRCA Variants: A Mixed Methods Study.
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DOI：
10.3390/genes14071450
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发表时间：
2023-07-15
期刊：
影响因子：
3.5
通讯作者：
Dwyer, Andrew A.
中科院分区：
文献类型：
--
作者：
Hesse-Biber, Sharlene;Seven, Memnun;Shea, Hannah;Heaney, Madeline;Dwyer, Andrew A.
乳腺癌基因（BRCA）风险的家族内沟通和随后的级联筛查的决策是复杂的，受个人，人际和医疗保健系统相关因素的影响。影响家族内风险沟通的因素缺乏证据，特别是在不同种族和种族的个体中进行BRCA变异检测。需要深入了解影响沟通的多层次因素，才能充分发挥级联筛查改善健康结果的潜力。本研究提供了指导理论驱动的，多层次的干预措施，以提高基因组保健对不同人群的利用。本研究旨在更深入地了解基因组医疗保健利用，患者激活和家族内风险沟通在不同种族和民族的个体检测BRCA变异。在计划行为理论的指导下，我们采用了一种解释性的、顺序的、混合方法的研究。参与者完成了一项在线调查，包括社会人口统计、病史和一些经过验证的工具。一部分参与者参加了深入的半结构化访谈。共有242名妇女参与了定量分析。大多数调查参与者被确定为非西班牙裔白人（NHW） （n = 197, 81.4%），而45/242（18.5%）被确定为黑人、土著和有色人种（BIPOC）。与BIPOC参与者相比，NHW参与者更有可能将基因检测结果告知医疗服务提供者、家人和朋友（p < 0.05）。BIPOC参与者对测试决策的满意度较低，对个人歧视、宿命论、恢复力、不确定性的评分显著较高，患者激活评分较低（p < 0.05）。受教育程度较高、对检测决策满意度较高、复原力较低的参与者更有可能通过患者激活的中介作用将BRCA检测结果告知家庭成员。弥合差异以确保基因组保健惠及所有人可能需要理论驱动的、针对个人、人际和医疗保健系统层面的多层次干预措施。
Decision-making on intrafamilial communication of Breast Cancer gene (BRCA) risk and subsequent cascade screening is complex and affected by individual, interpersonal, and healthcare system-related factors. There is a paucity of evidence on factors affecting intrafamilial risk communication, especially among ethnically and racially diverse individuals tested for BRCA variants. A deep understanding of multi-level factors affecting communication is needed to reap the full potential of cascade screening for improving health outcomes. This study provides findings to guide theory-driven, multi-level interventions to enhance the utilization of genomic healthcare for diverse people. This study aimed to gain a deeper understanding of genomic healthcare utilization, patient activation, and intrafamilial risk communication among racially and ethnically diverse individuals tested for BRCA variants. We employed an explanatory, sequential, mixed-methods study guided by the Theory of Planned Behavior. Participants completed an online survey, including sociodemographic, medical history, and several validated instruments. A subset of participants participated in in-depth, semi-structured interviews. A total of 242 women were included in the quantitative analyses. The majority of survey participants identified as non-Hispanic white (NHW) (n = 197, 81.4%) while 45/242 (18.5%) identified as black, Indigenous, and people of color (BIPOC). The NHW participants were more likely to communicate genetic test results with healthcare providers, family, and friends than BIPOC participants (p < 0.05). BIPOC participants had lower satisfaction with testing decisions and significantly higher ratings of personal discrimination, fatalism, resilience, uncertainty, and lower patient activation scores (p < 0.05). Participants with higher education, greater satisfaction with testing decisions, and lower resilience are more likely to communicate BRCA test results with family members through the mediating effect of patient activation. Bridging disparities to ensure that genomic healthcare benefits all people may demand theory-driven, multi-level interventions targeting the individual, interpersonal, and healthcare system levels.
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