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

项目摘要/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、 繁重的无面筋饮食(GFD)。目前的提案使用了理论驱动的经验方法来 通过以下方式针对青少年及其父母的知识、行为和应对技能优化GFD 教育和认知行为技术。与远程保健和短信(短信服务； “文本”)提供干预的技术有可能减少专门治疗的障碍 无论是实施的早期阶段还是后期阶段。这项有指导意义的K23奖项与NIDDK的使命一致 “开展和支持医学研究和研究培训，并传播以科学为基础的信息” 改善消化系统疾病等条件，提高人民健康和生活质量。拟议的培训和 研究计划将为应聘者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，长期致力于优化青少年及其家庭的CD治疗。 拟议的K23项目和培训计划旨在通过(1)中的高级培训来实现这一目标 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)测量青少年的自我管理 慢性胃肠道疾病；以及(4)加强基于干预的赠款撰写技能和研究传播。这个 拟议的研究和培训计划得到了该机构(国家儿童医院)的全力支持，并将 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提供指导 儿科慢性病的干预措施(首席导师史翠珊博士、共同导师海因兹博士和施特林德博士。 Opipari-Arrigan顾问)，CD治疗和对GFD管理的评价(Kerzner和Liu博士)，以及 先进的研究方法(博斯特博士)。这项拟议的研究将提炼和测试一种针对 患有CD的青少年及其父母使用以利益相关者为中心的迭代设计。它将包括对 通过一系列焦点小组(n=5)对青少年(12-16岁)及其父母进行的行为干预 DYADS)，然后是概念验证测试(n=5 DYADS)和小型试点RCT(n=60 DYADS)。概念证明 测试将检查干预的可行性、可接受性、影响，并根据以下方面进行进一步的改进 反馈。RCT将检查干预的初步效果及其对生活质量和GFD的影响 以自我效能感、疾病认同感和与食物相关的活动为目标进行管理。创新的和 此K23所产生的重要数据将直接将候选人定位为确保未来资金的 独立调查员。这项研究将提供初步数据，以支持大规模的RCT 干预，继续利用远程保健和短信等技术促进获取 然后伸手。这项工作有可能对护理标准和可获得性产生持久的影响 对青少年及其家庭进行优化CD管理的治疗。

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.