Why Is Cancer Genetic Counseling Underutilized by Women Identified as at Risk for Hereditary Breast Cancer? Patient Perceptions of Barriers Following a Referral Letter

Why Is Cancer Genetic Counseling Underutilized by Women Identified as at Risk for Hereditary Breast Cancer? Patient Perceptions of Barriers Following a Referral Letter
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DOI:
10.1007/s10897-016-0040-0
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发表时间:
2017-08-01
影响因子:
1.9
通讯作者:
Tsai, Michaela L.
Tsai, Michaela L.
中科院分区:
医学4区
文献类型:
--
作者:
Kne, Alyssa;Zierhut, Heather;Tsai, Michaela L.

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家族史信息是识别和转介有遗传性乳腺癌和卵巢癌(HBOC)风险的患者接受癌症遗传咨询的重要工具。尽管许多专业组织提供了建议和支持,但癌症遗传咨询服务未被高危患者充分利用。本研究旨在:(1)确定转介信后遗传咨询的利用率,(2)描述影响接受服务的因素(障碍和支持),(3)确定提高利用率的潜在策略。这项研究评估了603名筛查乳腺X线摄影患者接受癌症遗传咨询的情况,这些患者根据国家综合癌症网络(NCCN)指南被确定为HBOC风险增加。处于风险中的个人和他们的初级保健提供者被邮寄了一封推荐遗传咨询的推荐信。进行了三个焦点小组(N = 24),以确定响应收到一封信,建议遗传咨询,寻求遗传咨询的障碍,并利用这些服务的促进因素。参与者的反应进行了定性分析,使用主题和跨案例分析。在一年内,50/603(8%)被确定为有风险的妇女完成了遗传咨询预约。影响他们决定不寻求遗传咨询的障碍包括缺乏相关性和实用性,对遗传咨询的知识有限,对遗传咨询过程的担忧,以及对费用和保险范围的担忧。患者认为的促进因素,这将支持决定寻求遗传咨询包括更多的认识和教育遗传咨询服务时,接受转介,并改善后续行动和指导,从他们的提供者。这项研究的结果支持需要对患者和初级保健提供者进行教育,并改善提供者与患者的沟通,以增加遗传咨询服务的使用。
Family history information comprises an important tool in identifying and referring patients at risk for hereditary breast and ovarian cancer (HBOC) to cancer genetic counseling. Despite recommendations and support provided by numerous professional organizations, cancer genetic counseling services are underutilized by atrisk patients. This study aimed to: (1) determine the rate of genetic counseling utilization following a referral letter, (2) characterize factors (barriers and supports) which influenced uptake of services, and (3) identify potential strategies for increasing utilization. This study evaluated the uptake of cancer genetic counseling among 603 screening mammography patients identified as having an increased risk for HBOC based on National Comprehensive Cancer Network (NCCN) guidelines. At risk individuals and their primary care providers were mailed a referral letter recommending genetic counseling. Three focus groups (N = 24) were conducted to identify responses to receiving a letter recommending genetic counseling, barriers to seeking genetic counseling, and facilitating factors to utilizing these services. Participant responses were qualitatively analyzed using thematic and cross case analysis. Within one year, 50/603 (8 %) of the identified at-risk women completed a genetic counseling appointment. Participant-perceived barriers which influenced their decision not to seek genetic counseling included lack of relevance and utility, limited knowledge about genetic counseling, concerns about the genetic counseling process, and concerns about cost and insurance coverage. Participant-perceived facilitating factors which would support a decision to seek genetic counseling included greater awareness and education about genetic counseling services when receiving a referral, and improved follow up and guidance from their provider. Findings from this study support the need for patient and primary care provider education, and improved provider-patient communication to increase uptake of genetic counseling services.