A behavioral intervention to optimize self-management of celiac disease in adolescents

项目总结/摘要 乳糜泻（CD）是一种慢性自身免疫性疾病，目前唯一可用的治疗方法是严格， 无麸质饮食（GFD）。目前的建议使用理论驱动的实证方法， 通过针对知识、行为和应对技能，优化青少年及其父母的GFD， 教育和认知行为技术。与远程保健和SMS（短信服务）相结合; “text”）提供干预的技术有可能减少专业治疗的障碍， 实施的早期和后期阶段。这一指导K23奖符合NIDDK的使命， “开展和支持医学研究和研究培训，并传播科学信息”， 如消化系统疾病的条件，以改善人们的健康和生活质量。拟议的培训和 研究计划将为候选人提供必要的经验和培训机会，以实现 作为一名独立的临床研究人员，长期致力于为青少年及其家庭优化CD治疗。 拟议的K23项目和培训计划旨在通过（1）中的高级培训实现这一目标。 在现实环境中开发和评估以患者为中心的家庭干预措施;（2）利用和 行为干预技术的统计分析;（3）测量青年的自我管理， 慢性胃肠道疾病;和（4）提高干预为基础的赠款写作技巧和研究传播。的 拟议的研究和培训计划得到该机构（国家儿童医院）的全力支持， 由两名共同导师和四名具有家庭专业知识的科学顾问组成的多学科团队指导 儿童慢性疾病的干预措施（Streisand博士，主要导师，Hinds博士，共同导师，和Dr. Opipari-Arrigan，顾问），CD治疗和GFD管理的评价（Kerzner和Liu博士），以及 先进的研究方法（博士博斯特）。拟议的研究将完善和测试行为干预， CD青少年和他们的父母使用一个迭代的以持有者为中心的设计。它将包括一个 通过一系列焦点小组（n=5）对青少年（12-16岁）及其父母进行行为干预 二对），然后是概念验证测试（n=5二对）和小型试点RCT（n=60二对）。概念验证 测试将检查干预措施的可行性、可接受性、影响，并根据以下方面进行进一步改进： 反馈RCT将检查干预的初步疗效及其对QOL和GFD的影响 通过针对自我效能、疾病识别和食物相关活动进行管理。创新和 从这个K23产生的重要数据将直接定位候选人，以确保未来的资金， 独立调查员这项研究将提供初步数据，以支持大规模的随机对照试验， 采取干预措施，继续利用远程保健和短信等技术来促进获得服务 和到达。这项工作有可能对护理标准产生持久的影响， 治疗，以优化青年及其家庭的CD管理。

PROJECT SUMMARY/ABSTRACT Celiac disease (CD) is a chronic autoimmune condition whose only currently available treatment is a strict, burdensome gluten-free diet (GFD). The current proposal uses a theory-driven empirical approach for optimizing the GFD for teens and their parents by targeting knowledge, behavior, and coping skills through educational and cognitive behavioral techniques. Integration with telehealth and SMS (short-message service; “text”) technology for delivering the intervention has the potential reduce barriers to specialized treatment at both early and later stages of implementation. This mentored K23 award aligns with NIDDK's mission to “conduct and support medical research and research training and to disseminate science-based information” to conditions such as digestive diseases to improve people's health and quality of life. The proposed training and research plan will provide the necessary experience and training opportunities for the candidate to achieve a long-term career as an independent clinical researcher in optimizing CD treatment for youth and their families. The proposed K23 project and training plan is designed achieve this goal through advanced training in (1) Developing and evaluating patient-centered family interventions in real-world settings; (2) Utilization and statistical analysis of technology for behavioral interventions; (3) Measuring self-management in youth with chronic GI illness; and (4) Enhancing intervention-based grant writing skills and research dissemination. The proposed research and training plan is fully supported by the institution (Children's National Hospital) and will be guided by a multidisciplinary team of two co-mentors and four scientific advisors with expertise in family interventions for pediatric chronic illness (Dr. Streisand, Primary Mentor, Dr. Hinds, Co-Mentor, and Dr. Opipari-Arrigan, Advisor), CD treatment and evaluation of GFD management (Drs. Kerzner and Liu), and advanced research methods (Dr. Bost). The proposed research will refine and test a behavioral intervention for teens with CD and their parents using an iterative stakeholder-centered design. It will consist of refinement of a behavioral intervention for use with teens (ages 12-16) and their parents through a series of focus groups (n=5 dyads), followed by proof of concept testing (n=5 dyads) and a small pilot RCT (n=60 dyads). Proof of concept testing will examine intervention feasibility, acceptability, impact, and lead to further refinements based on feedback. The RCT will examine preliminary efficacy of the intervention and its impact on QOL and GFD management by targeting self-efficacy, illness identity, and food-related activities. The innovative and significant data resulting from this K23 will directly position the candidate to secure future funding as an independent investigator. This research would provide preliminary data to support a large-scale RCT of the intervention, with continued leveraging of technology such as telehealth and text messaging to facilitate access and reach. This work has the potential to make a lasting impact on the standards of care and available treatments to optimize CD management in youth and their families.