Interactive CD-ROM on Cancer Genetics for Hispanics

描述(由申请人提供)： 背景：人们越来越意识到家族史是疾病的风险因素，遗传性癌症的基因检测也在不断增加。然而，缺乏有效、高效的资源来教育个人关于遗传癌症风险的知识，特别是在遗传学服务服务不足的地理地区。特别是，拉美裔美国人缺乏既具有文化相关性又有西班牙语版本的癌症遗传学教育资源。广泛的长期目标是通过展示交互式计算机程序作为有效和可持续的教育资源的有效性，提高拉美裔妇女对乳腺癌风险的理解。 目的：我们建议首先修改和调整一个有效的、基于计算机的交互式程序--“乳腺癌风险和基因检测”，使其在文化和语言上适合西班牙裔。其次，我们建议对单独使用和由训练有素的推动者或非专业卫生工作者指导的修改后的计算机程序进行随机、对照评估。 方法：将使用定性方法来确定对当前计算机程序的更改和修改，以使其更具文化相关性。修改后的程序将以英语和西班牙语创建。将进行由有乳腺癌病史的西班牙裔妇女以及有乳腺癌家族病史的西班牙裔妇女组成的焦点小组，以及关键线人访谈和专家小组审查。在为拉美裔观众修改和改编该计划后，我们将从一个社区卫生组织招募妇女参加随机试验，以评估该计划的效果。妇女将被随机分成两组，在训练有素的非专业卫生工作者或推动者的指导下使用该计划，或者在没有帮助的情况下使用该计划。主要结果，包括知识、感知风险、决策满意度、卫生保健服务利用和对干预的满意度，将在干预后立即、干预后1个月和6个月进行测量。 相关性：缺乏有效、高效的资源来教育个人遗传癌症风险，特别是在遗传学服务服务不足的地理地区。特别是，拉美裔美国人缺乏既具有文化相关性又有西班牙语版本的癌症遗传学教育资源。这项研究将使用两种有效和可接受的健康教育和健康促进方法的创新应用，以满足生活在遗传学服务不足的地理区域的拉美裔妇女的需求。在这样做时，我们将通过以令人满意、可接受和有效的方式提供妇女所需的信息，解决一个重要的教育空白。

DESCRIPTION (provided by applicant): Background: There is a growing awareness of family history as a risk factor for disease and the availability of genetic testing for inherited cancers continues to increase. However, effective, efficient resources for educating individuals about inherited cancer risk are lacking, especially in geographic areas that are underserved by genetics services. In particular, there is a dearth of educational resources for Hispanics on cancer genetics that are both culturally relevant and available in Spanish. The broad, long-term objective is to improve Hispanic women's understanding about breast cancer risk by demonstrating the effectiveness of an interactive computer program as an effective and sustainable educational resource. Aims: We propose to first modify and adapt an effective, interactive computer-based program, "Breast Cancer Risk and Genetic Testing," to be culturally and linguistically appropriate for Hispanic. Second, we propose to conduct a randomized, controlled evaluation of the modified computer program when used alone vs. when guided by a trained promotora, or lay health worker. Methods: Qualitative methods will be used to identify changes and modifications to the current computer program to make it more culturally relevant. The modified program will be created in both English and Spanish. Focus groups consisting of Hispanic women with a prior history of breast cancer as well as those with a family history of the disease will be conducted, along with key informant interviews and expert panel reviews. Following the modification and adaptation of the program for a Hispanic audience, we will recruit women from a community-based health organization for participation in a randomized trial to evaluate the effectiveness of the program. Women will be randomized to use the program under the guidance of a trained lay health worker, or promotora, or to use the program unassisted. Main outcomes, including knowledge, perceived risk, decisional satisfaction, use of health care services, and satisfaction with the intervention, will be measured immediately following the intervention, and at 1 and 6 months post-intervention. Relevance: Effective, efficient resources for educating individuals about inherited cancer risk are lacking, especially in geographic areas that are underserved by genetics services. In particular, there is a dearth of educational resources for Hispanics on cancer genetics that are both culturally relevant and available in Spanish. This study will use an innovative application of two effective and acceptable health education and health promotion methods to address the needs of Hispanic women living in a geographic area that is underserved in terms of genetics services. In doing so, we will address an important educational void by providing the information women need in a manner that is satisfying, acceptable and effective.