Abstract B32: Utilization and outcomes of cancer genetics referrals at a community cancer program

R. Akindele, H. Rana, Sarah R. Cochrane, L. Svoboda, C. Lathan
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The aim of this study was to determine clinic utilization rates, uptake, and outcomes of genetic evaluations as well as to describe the barriers to obtaining genetic testing among patients referred to the CCP. Methods: The intervention cohort consisted of patients referred to the CCP by their primary care providers (PCP) for cancer genetics counseling and testing between August 2013 and April 2017. A geneticist and a genetic counselor from DFCI9s Cancer Risk and Prevention Program provided risk assessment and counseling according to the National Comprehensive Cancer Network (NCCN) guidelines. Prospective data approved by the IRB were collected on a secured REDcap database that was designed for the CCEP. Information including attendance at clinic, patient demographics, personal and family history of cancer or familial mutation, previous genetic testing for cancer, recommendation for genetic testing, uptake, and results were extracted and analyzed descriptively (JMP Pro version 12, SAS Institute Inc., Cary, NC). Results: Seventy out of 118 patients referred by PCPs attended clinic, indicating a no-show rate of 41%. Of the 70, 62 (89%) consented to research. The mean age of the study population was 43 (SD±11.6) years and 87% were women. More than half of the participants (57%) were Blacks/African Americans (Non-Hispanic-31% and Hispanic-26%), 32% were Whites (Non-Hispanic-13% and Hispanic-19%), and 8% were other races. Interpreter services, mainly Spanish, were provided for 32% of participants. The majority (76%) had Medicaid insurance, 8% had Medicare,13% had private insurance, and 3% had health safety net/free care. While not mutually exclusive, 66% of participants reported a family history of breast cancer, 32% ovarian cancer, 23% colorectal cancer, and 23% other cancers. There were two (3%) participants with a personal history of cancer, two (3%) with a presence of familial mutation among family members (BRCA 1/2), and two (3%) with prior genetic testing. Of the two who had prior testing, one had a familial mutation (APC). Overall, 43 (69%) participants were recommended for genetic testing. The most frequent reason for non-recommendation was that there was a better testing candidate in the family (53%). Another 21% were asked to clarify their family history before completing cancer risk assessment. Of the 43 who were recommended for testing, 32(74%) completed testing with nearly all (91%) testing for multigene panels. Lack of insurance coverage was the most frequent (73%) reason for not undergoing a test. Among those who completed testing, a pathogenic mutation (MUTYH) was identified in one participant (3%), while 13 (39%) had variants of unknown significance (VUS) and 18 (59%) had no mutations identified. Conclusions: Our findings highlight the need for increased knowledge of family history and utilization of cancer genetic services among underserved and minority populations. Additionally, efforts should be made to improve insurance coverage for genetic testing in high-risk underserved individuals. Further research on the clinical significance of variants of uncertain significance identified in ethnic minority populations is also advised. Citation Format: Ruth N. Akindele, Huma Q. Rana, Sarah R. Cochrane, Ludmila A. Svoboda, Christopher S. Lathan. Utilization and outcomes of cancer genetics referrals at a community cancer program [abstract]. In: Proceedings of the Tenth AACR Conference on the Science of Cancer Health Disparities in Racial/Ethnic Minorities and the Medically Underserved; 2017 Sep 25-28; Atlanta, GA. Philadelphia (PA): AACR; Cancer Epidemiol Biomarkers Prev 2018;27(7 Suppl):Abstract nr B32.","PeriodicalId":254061,"journal":{"name":"Behavioral and Social Science","volume":"247 1","pages":"0"},"PeriodicalIF":0.0000,"publicationDate":"2018-07-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":"0","resultStr":null,"platform":"Semanticscholar","paperid":null,"PeriodicalName":"Behavioral and Social Science","FirstCategoryId":"1085","ListUrlMain":"https://doi.org/10.1158/1538-7755.DISP17-B32","RegionNum":0,"RegionCategory":null,"ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":null,"EPubDate":"","PubModel":"","JCR":"","JCRName":"","Score":null,"Total":0}
引用次数: 0

Abstract

The majority of research on cancer genetic counseling and testing has been conducted in academic medical centers and among predominantly Caucasian cohorts. Unfortunately, underserved and minority populations who have a disproportionate burden of cancer have, historically, had limited access to and poor utilization of these services despite proven benefits of cancer risk reduction in high-risk individuals. Based on a unique co-location model that addresses this disparity gap, the Dana-Farber Cancer Institute (DFCI)9s Cancer Care Equity Program (CCEP) added a genetics arm to its Community Cancer Program (CCP), housed in a neighborhood Federally Qualified Community Health Center (FQHC) in 2013. The aim of this study was to determine clinic utilization rates, uptake, and outcomes of genetic evaluations as well as to describe the barriers to obtaining genetic testing among patients referred to the CCP. Methods: The intervention cohort consisted of patients referred to the CCP by their primary care providers (PCP) for cancer genetics counseling and testing between August 2013 and April 2017. A geneticist and a genetic counselor from DFCI9s Cancer Risk and Prevention Program provided risk assessment and counseling according to the National Comprehensive Cancer Network (NCCN) guidelines. Prospective data approved by the IRB were collected on a secured REDcap database that was designed for the CCEP. Information including attendance at clinic, patient demographics, personal and family history of cancer or familial mutation, previous genetic testing for cancer, recommendation for genetic testing, uptake, and results were extracted and analyzed descriptively (JMP Pro version 12, SAS Institute Inc., Cary, NC). Results: Seventy out of 118 patients referred by PCPs attended clinic, indicating a no-show rate of 41%. Of the 70, 62 (89%) consented to research. The mean age of the study population was 43 (SD±11.6) years and 87% were women. More than half of the participants (57%) were Blacks/African Americans (Non-Hispanic-31% and Hispanic-26%), 32% were Whites (Non-Hispanic-13% and Hispanic-19%), and 8% were other races. Interpreter services, mainly Spanish, were provided for 32% of participants. The majority (76%) had Medicaid insurance, 8% had Medicare,13% had private insurance, and 3% had health safety net/free care. While not mutually exclusive, 66% of participants reported a family history of breast cancer, 32% ovarian cancer, 23% colorectal cancer, and 23% other cancers. There were two (3%) participants with a personal history of cancer, two (3%) with a presence of familial mutation among family members (BRCA 1/2), and two (3%) with prior genetic testing. Of the two who had prior testing, one had a familial mutation (APC). Overall, 43 (69%) participants were recommended for genetic testing. The most frequent reason for non-recommendation was that there was a better testing candidate in the family (53%). Another 21% were asked to clarify their family history before completing cancer risk assessment. Of the 43 who were recommended for testing, 32(74%) completed testing with nearly all (91%) testing for multigene panels. Lack of insurance coverage was the most frequent (73%) reason for not undergoing a test. Among those who completed testing, a pathogenic mutation (MUTYH) was identified in one participant (3%), while 13 (39%) had variants of unknown significance (VUS) and 18 (59%) had no mutations identified. Conclusions: Our findings highlight the need for increased knowledge of family history and utilization of cancer genetic services among underserved and minority populations. Additionally, efforts should be made to improve insurance coverage for genetic testing in high-risk underserved individuals. Further research on the clinical significance of variants of uncertain significance identified in ethnic minority populations is also advised. Citation Format: Ruth N. Akindele, Huma Q. Rana, Sarah R. Cochrane, Ludmila A. Svoboda, Christopher S. Lathan. Utilization and outcomes of cancer genetics referrals at a community cancer program [abstract]. In: Proceedings of the Tenth AACR Conference on the Science of Cancer Health Disparities in Racial/Ethnic Minorities and the Medically Underserved; 2017 Sep 25-28; Atlanta, GA. Philadelphia (PA): AACR; Cancer Epidemiol Biomarkers Prev 2018;27(7 Suppl):Abstract nr B32.
B32:社区癌症项目中癌症遗传学转诊的利用和结果
大多数关于癌症遗传咨询和检测的研究都是在学术医疗中心进行的,主要是在高加索人群中进行的。不幸的是,从历史上看,服务不足和癌症负担不成比例的少数群体获得这些服务的机会有限,利用程度也很差,尽管已证明对高危人群有降低癌症风险的好处。2013年,丹娜-法伯癌症研究所(DFCI)的癌症护理公平计划(CCEP)在其社区癌症计划(CCP)中增加了一个遗传学部门,该计划位于附近的联邦合格社区卫生中心(FQHC)。本研究的目的是确定遗传评估的临床使用率、摄取和结果,并描述转介到CCP的患者获得基因检测的障碍。方法:干预队列包括2013年8月至2017年4月期间由其初级保健提供者(PCP)转介至CCP进行癌症遗传学咨询和检测的患者。来自DFCI9s癌症风险和预防项目的遗传学家和遗传咨询师根据国家综合癌症网络(NCCN)指南提供风险评估和咨询。经IRB批准的前瞻性数据在专为CCEP设计的安全REDcap数据库中收集。提取并描述性分析包括就诊、患者人口统计、个人和家族史癌症或家族突变、既往癌症基因检测、基因检测推荐、摄取和结果在内的信息(JMP Pro version 12, SAS Institute Inc., Cary, NC)。结果:118例经pcp转诊的患者中有70例到门诊就诊,失诊率为41%。在70人中,62人(89%)同意进行研究。研究人群的平均年龄为43 (SD±11.6)岁,其中87%为女性。超过一半的参与者(57%)是黑人/非裔美国人(非西班牙裔31%和西班牙裔26%),32%是白人(非西班牙裔13%和西班牙裔19%),8%是其他种族。为32%的参与者提供了以西班牙语为主的口译服务。大多数人(76%)有医疗补助保险,8%有医疗保险,13%有私人保险,3%有健康安全网/免费医疗。66%的参与者报告有乳腺癌家族史,32%有卵巢癌家族史,23%有结直肠癌家族史,23%有其他癌症家族史。有两名(3%)参与者有个人癌症病史,两名(3%)参与者有家族成员之间的家族突变(BRCA 1/2),两名(3%)参与者有先前的基因检测。在之前接受检测的两名患者中,有一名患有家族性突变(APC)。总体而言,43名(69%)参与者被推荐进行基因检测。不推荐的最常见原因是家庭中有更好的测试候选人(53%)。另有21%的人被要求在完成癌症风险评估之前澄清他们的家族史。在被推荐进行检测的43人中,32人(74%)完成了几乎所有(91%)的多基因面板检测。缺乏保险是不接受检查最常见的原因(73%)。在完成检测的参与者中,1人(3%)鉴定出致病性突变(MUTYH), 13人(39%)鉴定出不明意义变异(VUS), 18人(59%)未鉴定出突变。结论:我们的研究结果强调需要增加对家族史的了解,并在服务不足和少数民族人群中利用癌症遗传服务。此外,应努力提高对服务不足的高风险个体进行基因检测的保险覆盖面。建议进一步研究在少数民族人群中发现的意义不确定的变异的临床意义。引文格式:Ruth N. Akindele, Huma Q. Rana, Sarah R. Cochrane, Ludmila A. Svoboda, Christopher S. Lathan。社区癌症项目中癌症遗传学转诊的利用和结果[摘要]。见:第十届AACR会议论文集:种族/少数民族和医疗服务不足人群的癌症健康差异科学;2017年9月25-28日;亚特兰大,乔治亚州。费城(PA): AACR;癌症流行病学杂志,2018;27(7增刊):摘要nr B32。
本文章由计算机程序翻译,如有差异,请以英文原文为准。
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