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Racial disparities in cancer genetic counseling encounters in the naturalistic clinical setting

自然临床环境中癌症遗传咨询遭遇的种族差异

基本信息

批准号：
10684331
负责人：
Nao Hagiwara
金额：
$ 55.79万
依托单位：
VIRGINIA COMMONWEALTH UNIVERSITY
依托单位国家：
美国
项目类别：
财政年份：
2022
资助国家：
美国
起止时间：
2022-08-15 至 2027-07-31
项目状态：
未结题

来源：
https://reporter.nih.gov/project-details/10684331
关键词：
Address African American Belief Black Populations Black race COVID-19 Cancer Control Clinical Code Communication Communication Research Consent Data Development Disparity Educational process of instructing Feeling Genetic Counseling Genetic Transcription Genetic testing for cancer risk Goals Health Disparities Research Healthcare Knowledge Linguistics Link Malignant Neoplasms Medical Modality Multicenter Studies National Cancer Institute Nature Observational Study Outcome Patient Self-Report Patient-Focused Outcomes Patients Pattern Persons Physicians Play Prejudice Prevention Process Professional counselor Provider Race Recommendation Research Research Design Research Methodology Research Personnel Risk Assessment Role Scientific Advances and Accomplishments Stereotyping Surveys Testing Therapeutic Training Training Programs Trust Video Recording Work black patient cancer genetics cancer health disparity cancer risk clinical encounter cost effective current pandemic empowerment frontier genetic counselor genetic predictors genetic testing health care disparity pandemic disease patient-clinician communication programs provider factors racial bias racial disparity racial minority racial population racial prejudice satisfaction telehealth testing uptake theories

项目摘要

Despite decades of effort to reduce racial cancer disparities, Black people continue to die at higher rates from cancer than any other U.S. racial group. Because prevention is the key to the cost-effective and long-term control of cancer, the potential for cancer genetic counseling to play a central role in reducing racial cancer disparities is high. However, the benefits of genetic counseling are not equitable across race. The overarching goal of this proposed research is to compare and contrast the nature of genetic counseling encounters and patient-centered outcomes between Black and White patients in the naturalistic clinical setting. Only 2% of genetic counselors self-identify as Black/African American, so most genetic counseling encounters with Black patients are racially discordant. Patients in racially discordant medical interactions tend to have poorer quality patient-provider communication and receive suboptimal clinical recommendations. One major factor that contribute to these racial healthcare disparities is racial bias. Drawing on findings from prior research, we hypothesize that genetic counselor providers' greater implicit racial prejudice will be associated with poorer patient-provider communication, while providers' explicit negative racial stereotypes will be associated with less comprehensive clinical discussion of cancer risk and genetic testing for Black (vs. White) patients. These disparities in encounters will be further associated with poorer patient-centered outcomes. We will test our hypotheses by addressing four specific aims: Aim 1) to compare/contrast the nature of patient-provider communication by patient race (Black or White); Aim 2) to compare/contrast the clinical discussion content by patient race; Aim 3) to quantify the role of each type of counselor bias in patient-provider communication (Aim 1) and clinical discussion content (Aim 2); and Aim 4) to quantify the role of patient-provider communication/ clinical discussion content with patient-centered outcomes (trust, satisfaction, therapeutic alliance, empowerment, genetic testing uptake). These aims will be achieved through an observational study with a convergent mixed methods research design. We will analyze recorded cancer genetic counseling encounters both qualitatively and quantitatively, linking those data to data from pre- and post-encounter surveys and medical chart reviews. With COVID-19, many genetic counseling encounters have moved to telehealth, and telehealth is expected to continue to thrive beyond the pandemic. The proposed study will embrace this unique, transitional opportunity and addresses the overarching goal in the naturalistic clinical setting through multiple modalities (in-person, telehealth). Findings from this multi-center study will highlight specific aspects of cancer genetic counseling encounters (patient-provider communication and clinical recommendations) that are directly associated with patient-centered outcomes. Patient-provider communication and clinical recommendations are modifiable factors, and they are already being taught in genetic counseling training programs; thus, the findings can have immediate impact on genetic counseling training and practice.

尽管几十年来一直在努力减少种族癌症差异，但黑人死于癌症比美国其他任何种族都要多。因为预防是性价比和长效的关键控制癌症，癌症遗传咨询在减少种族癌症方面发挥核心作用的潜力差距很大。然而，遗传咨询的好处在不同种族之间并不公平。最重要的是这项拟议的研究的目标是比较和对比遗传咨询遭遇和自然主义临床环境下黑人和白人患者之间以患者为中心的结果。只有2%的遗传咨询师自我认同为黑人/非裔美国人，因此大多数遗传咨询都遇到了黑人患者在种族上是不和谐的。在种族不协调的医疗互动中，患者的质量往往较差患者与提供者之间的沟通，并收到不太理想的临床建议。一个主要因素是造成这些种族医疗保健差异的原因是种族偏见。根据先前研究的结果，我们假设遗传顾问提供者的更大的隐性种族偏见将与更贫穷的人相关患者与提供者之间的沟通，而提供者明确的负面种族刻板印象将与对黑人(与白人)患者的癌症风险和基因测试的临床讨论较少。这些相遇的差异将进一步与更差的以患者为中心的结果相关。我们将测试我们的通过解决四个具体目标进行假设：目标1)比较/对比患者-提供者的性质按患者种族(黑人或白人)进行沟通；目标2)通过以下方式比较/对比临床讨论内容患者竞赛；目标3)量化每种类型的咨询师偏见在患者-提供者沟通中的作用(目标 1)和临床讨论内容(目标2)；以及目标4)量化患者-提供者沟通/ 以患者为中心的临床讨论内容(信任、满意度、治疗联盟、赋权、基因测试吸收)。这些目标将通过一项观察性研究来实现，收敛混合法研究设计。我们将分析记录下来的癌症遗传咨询遭遇在定性和定量上，将这些数据与相遇前和相遇后调查的数据联系起来病历审查。有了新冠肺炎，许多遗传咨询机会都转移到了远程健康上，而且预计远程医疗将在大流行之后继续蓬勃发展。拟议的研究将包含这一点独特的过渡机会，并通过以下途径解决自然主义临床环境中的首要目标多种医疗模式(面对面、远程医疗)。这项多中心研究的结果将突出具体的方面癌症遗传咨询(患者-提供者沟通和临床建议)是与以患者为中心的结果直接相关。医患沟通与临床建议是可修改的因素，它们已经在遗传咨询培训中被教授因此，研究结果可以对遗传咨询培训和实践产生立竿见影的影响。