Barriers in Identification and Referral to Genetic Counseling for Familial Cancer Risk: The Perspective of Genetic Service Providers
Barriers in Identification and Referral to Genetic Counseling for Familial Cancer Risk: The Perspective of Genetic Service Providers
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DOI：
10.1007/s10897-011-9351-3
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发表时间：
2011-06-01
影响因子：
1.9
通讯作者：
Valdez, Rodolfo
中科院分区：
文献类型：
--
作者：
Rolnick, Sharon J.;Rahm, Alanna K.;Valdez, Rodolfo
本研究的目的是了解遗传咨询师对识别合适患者以及转诊高风险患者接受癌症遗传咨询服务的障碍的看法。来自八个综合卫生系统的遗传服务提供者接受了调查。数据分析包括描述性统计。 40 名潜在参与者中有 28 名做出了回应（70%）。家族癌症风险评估的转介绝大多数来自提供者 (89%)；只有 10% 是自我推荐。 46% 的受访者表示使用指南来协助提供者进行转介。遗传服务提供者认为患者在转诊后寻求遗传咨询的障碍包括：风险评估被视为非优先事项（72%）、担心对可保性的影响（52%）、预约距离（48%）、缺乏保险（44%）、患者/提供者缺乏对遗传咨询价值的了解（36%）、家庭成员的劝阻（28%）和恐惧（20%）。受访者建议增加适当转诊的最佳方法是参加会议并向肿瘤科医生、外科医生、初级保健医生和妇科医生进行演讲。遗传服务提供者报告了转介和使用遗传咨询的一些障碍。从提供商的角度来看，这一发现与当前文献是一致的。我们的调查增加了遗传服务提供者的观点，并确定了进一步研究和干预的机会领域，因为目前的教育工作几乎没有解决一些明显的障碍。
The purpose of this study was to obtain genetic counselors' perspectives about the identification of appropriate patients and barriers to referral of high-risk patients for cancer genetic counseling services. Genetic service providers from eight integrated health systems were surveyed. Data analysis included descriptive statistics. Twenty-eight of 40 potential participants responded (70%). Referrals for familial cancer risk assessment overwhelmingly came from providers (89%); only 10% were self-referrals. Use of guidelines to assist providers with referral was reported by 46% of the respondents. Genetic service providers perceived patient barriers to seeking genetic counseling after referral included: risk evaluation viewed as a non-priority (72%), concerns about impact on insurability (52%), distance to appointments (48%), lack of insurance (44%), lack of patient/provider knowledge about the value of genetic counseling (36%), discouragement by family members (28%), and fear (20%). The best approaches suggested by respondents to increase appropriate referrals were attending meetings and giving presentations to oncologists, surgeons, primary care and gynecologists. The genetic service providers reported several barriers to the referral and use of genetic counseling. This finding is consistent with current literature from the providers' perspective. Our survey adds the genetic service providers' perspective and identifies areas of opportunity for further research and intervention as few of the perceived barriers are being addressed through current educational efforts.