Bridging Geographic Barriers: Remote Cancer Genetics Counseling for Rural Women

跨越地理障碍：为农村妇女提供远程癌症遗传学咨询

• 批准号: 8469399
• 负责人: Anita Y. Kinney
• 金额: $ 3.71万
• 依托单位: UNIVERSITY OF UTAH
• 依托单位国家: 美国
• 财政年份: 2009
• 资助国家: 美国
• 起止时间: 2009-08-13 至 2013-07-31
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/8469399
• 关键词: Access to Information; Adoption; Affect; Affective; Anxiety; Area; BRCA1 gene; Behavioral; Breast; Cancer Center; Cancer Control; Client satisfaction; Clinical; Cognitive; Communication; Conflict (Psychology); Counseling; Data; Decision Making; Diffusion; Disclosure; Distant; Distress; Enrollment; Evaluation; Family history of; Genes; Genetic; Genetic Counseling; Genetic Services; Genetic screening method; Health; Health Services Accessibility; Healthcare; Hereditary Breast Carcinoma; Hereditary Breast and Ovarian Cancer Syndrome; High Risk Woman; Intervention; Knowledge; Life; Malignant Neoplasms; Malignant neoplasm of ovary; Mediating; Modeling; Mutation; Nature; Outcome; Outcome Study; Patients; Perception; Persons; Policies; Policy Maker; Population; Pre-Post Tests; Predisposition; Prevention strategy; Provider; Psychosocial Factor; Public Health; Publishing; Quality of Care; Quality of life; Randomized; Regrets; Relative (related person); Reporting; Risk; Role; Rural; Rural Health; Safety; Secondary Prevention; Services; Site; Source; Specialist; Specific qualifier value; Telecommunications; Telephone; Testing; Time; Woman; base; cancer genetics; cancer prevention; clinical practice; cost; design; experience; health disparity; health related quality of life; improved; innovation; patient oriented; prevent; psychologic; psychological distress; randomized trial; satisfaction; standard of care; uptake

DESCRIPTION (provided by applicant): Persons living in rural and other geographically underserved areas encounter considerable barriers that reduce or prevent convenient access to quality cancer genetic services. In-person genetic counseling for appropriately selected women by cancer genetic specialists has generally been accepted as the standard of care. The use of telecommunications to deliver clinical genetic services at a site distant from specialists has been suggested as an approach to reduce disparity in access in geographically challenged areas. Remote genetic counseling has the potential to improve health and enhance informed decision-making through access to information and communication with experienced providers without adversely affecting the quality of care. Although telephone counseling has been effectively used as a supplement to in-person genetic services, no published data are available that compare telephone genetic counseling as the sole source of pre-test and post-test disclosure counseling to standard in-person genetic counseling among high-risk women. However, many companies and some providers are offering telephone-based genetic counseling and testing services for cancer susceptibility. Many clinicians and policy makers are concerned about the quality of such counseling and whether counseling conducted over the telephone is as effective as standard in- person counseling. Before widespread adoption and diffusion of telephone-delivered cancer genetic services, it is important to determine whether this mode of genetic communication is comparable to the conventional in-person counseling model within the group where remote counseling is likely to be of greatest benefit, women residing in rural and other underserved areas. This two-group randomized equivalency/non-inferiority trial is designed to determine if genetic counseling delivered by telephone is an acceptable alternative to traditional in-person genetic counseling among 1132 geographically isolated women who have a personal and/or family history of breast and/or ovarian cancer strong enough to suggest that genetic counseling and testing is indicated. We will evaluate the following outcomes: genetic testing uptake, psychological distress, and health-related quality of life. We will also compare the two groups with regard to costs, patient centered communication, and informed decision- making outcomes such as decisional conflict, decision regret and perceived personal control as well as decisions regarding preventive strategies. Overall, our study's findings will provide important information to cancer centers and local public health decision makers about the safety, efficacy, and costs of delivering telephone-based clinical cancer genetic services for rural women at risk for having BRCA 1/2 mutations.

描述(由申请人提供)：居住在农村和其他服务不足地区的人遇到了相当大的障碍，减少或阻碍了人们方便地获得高质量的癌症基因服务。由癌症遗传专家为适当选择的女性提供的面对面遗传咨询已被普遍接受为护理的标准。有人建议利用电信在远离专家的地点提供临床遗传服务，以减少地理上有困难的地区在获得服务方面的差距。远程遗传咨询有可能通过获取信息和与有经验的提供者沟通，改善健康和加强知情决策，而不会对护理质量产生不利影响。尽管电话咨询已经被有效地用作面对面遗传服务的补充，但目前还没有公布的数据将电话遗传咨询作为高危女性检测前和检测后披露咨询的唯一来源与标准的面对面遗传咨询进行比较。然而，许多公司和一些供应商正在提供基于电话的癌症易感性遗传咨询和检测服务。许多临床医生和政策制定者担心这种咨询的质量，以及通过电话进行的咨询是否与标准的面对面咨询一样有效。在广泛采用和推广电话提供的癌症遗传服务之前，重要的是确定这种遗传交流模式是否可与群体内传统的面对面咨询模式相媲美，在这些群体中，远程咨询可能是最大的好处，居住在农村和其他服务不足地区的妇女。这项两组随机等同/非劣势试验旨在确定在1132名地理上与世隔绝的女性中，通过电话提供的遗传咨询是否是传统面对面遗传咨询的可接受替代方案，这些女性有乳腺癌和/或卵巢癌的个人和/或家族病史，足以表明有必要进行遗传咨询和检测。我们将评估以下结果：基因测试吸收、心理痛苦和与健康相关的生活质量。我们还将比较两组在成本、以患者为中心的沟通、决策冲突、决策后悔和个人控制感等知情决策结果以及关于预防策略的决策方面的差异。总体而言，我们的研究结果将向癌症中心和当地公共卫生决策者提供重要信息，说明为有BRCA 1/2突变风险的农村妇女提供基于电话的临床癌症基因服务的安全性、有效性和成本。