MyFAP: A Multimedia Intervention for Adolescents and Young Adults with FAP

描述(由申请人提供)：在这个第二阶段的STTR申请中，我们将建立在我们成功的第一阶段项目中进行的工作，该项目确立了为患有家族性腺瘤性息肉病(FAP)的青少年和年轻人(AYA)开发基于网络的干预措施MyFAP.org的技术优点、可接受性和可行性。第二阶段的主要研究目标是在随机对照试验中评估MyFAP.org在改善患有FAP的AYA患者的知识、自我效能和生活相关结果质量方面的有效性。研究设计与方法。在第二阶段，我们建议完成MyFAP.org干预措施的开发，包括内容和技术改进。我们将在一项针对患有FAP的年轻人的随机试验中，评估MyFAP.org在提高知识、自我效能和相关领域方面的有效性。这一第二阶段的项目将产生一种最终产品，能够有效地提供支持和促进自我管理，满足FAP的医疗和心理需求，并将成为向其他患有罕见疾病的人群提供基于网络的干预内容的典范。总共130名AYA将被随机分配到MyFAP.org干预组或由一个网站组成的注意力控制组，该网站提供有关健康生活方式行为的信息。参与者将完成基线评估，然后将获得一个超级链接，可以访问MyFAP.org或健康生活方式行为网站。后续评估将在干预后一个月和三个月进行。 公共卫生相关性：家族性腺瘤性息肉病是一种遗传性癌症综合征，其特征是发展成数百个息肉，通常从青春期开始，除非采取医疗干预，否则几乎100%的人终生都有患结直肠癌的风险。为了预防癌症，建议受影响的人从青春期开始通过内窥镜进行筛查，并需要在十几岁或二十出头时考虑预防性结肠切除术。尽管FAP给青少年和年轻人带来了巨大的医疗和心理负担，但为这一群体提供的信息和支助资源很少。我们的长期目标是开发和评估一种干预措施，该干预措施将提供信息和支持，以促进年轻人的自我管理和应对FAP独特的医疗和心理需求。

DESCRIPTION (provided by applicant): In this Phase II STTR application, we will build upon work conducted in our successful Phase I project which established the technical merit, acceptability and feasibility of developing a Web-based intervention, MyFAP.org, for adolescents and young adults (AYAs) with familial adenomatous polyposis (FAP). The main research goal of Phase II is to evaluate the efficacy of MyFAP.org in improving knowledge, self-efficacy, and quality of life-related outcomes among AYAs with FAP in a randomized controlled trial. Research Design and Methods. In Phase II, we propose to complete the development of the MyFAP.org intervention, including both content and technical enhancements. We will evaluate the efficacy of MyFAP.org in improving knowledge, self-efficacy, and related domains in a randomized trial of young persons with FAP. This Phase II project will result in a final product that is effective in providing support and facilitating self-management and coping with the medical and psychological demands of FAP, and will serve as a model for delivering web-based intervention content to other populations that suffer from rare conditions. A total of 130 AYAs will be randomized to the MyFAP.org intervention arm or an attention control arm consisting of a Web site with information on healthy lifestyle behaviors. Participants will complete baseline assessments, then will be provided with a hyperlink to access either MyFAP.org or the healthy lifestyle behavior website. Follow- up assessments will be conducted at one- and three-months post-intervention. PUBLIC HEALTH RELEVANCE: Familial adenomatous polyposis is an inherited cancer syndrome that is characterized by the development of hundreds of polyps, usually beginning by puberty, and by a nearly a 100 percent lifetime risk of colorectal cancer unless medical intervention is undertaken. To prevent cancer, affected persons are advised to begin screening by endoscopy beginning in their adolescent years, and will need to consider having a prophylactic colectomy by their late teens or early twenties. Despite the significant medical and psychological burden of FAP on adolescents and young adults, scant informational and supportive resources exist for this group. Our long- term goal is to develop and evaluate an intervention that will provide information and support to facilitate young persons' self-management and coping with the unique medical and psychological demands of FAP.