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STTR申请中，我们将建立在我们成功的第一阶段项目的基础上，该项目确定了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，用于患有家族性腺瘤性息肉病（FAP）的青少年和年轻人（AYAs）。II期的主要研究目标是在一项随机对照试验中评估MyFAP.org在提高FAP患者的知识、自我效能和生活相关结局质量方面的功效。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。我们将评估MyFAP.org在提高知识、自我效能和相关领域的有效性，在一项随机试验中，年轻的FAP患者。这一第二阶段项目将产生一种最终产品，有效地提供支助和促进自我管理，并应对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。总共有130名asa将被随机分配到MyFAP.org干预组或由一个提供健康生活方式行为信息的网站组成的注意力控制组。参与者将完成基线评估，然后将提供一个超链接，可访问MyFAP.org或健康生活方式行为网站。随访评估将在干预后1个月和3个月进行。

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.