Development of a Problem Solving Intervention to Improve Self-Management and Transition Readiness for Adolescents with Sickle Cell Disease

项目总结 镰状细胞病(SCD)的死亡率已经从儿童时期转移到青年时期。 在离开儿科护理后面临早期死亡的风险增加。缺乏过渡准备，情况不佳 支持发展自我管理技能在不利的过渡中发挥着重要作用 在这一弱势群体中的结果。因此，必须开发新的自我管理方法。 支持患有SCD的青少年在离开儿科护理之前管理自己的健康。问题 解决方案是许多慢性病自我管理计划的关键组成部分，帮助个人克服 自我管理的障碍。这使得问题解决对患有SCD的青少年来说是一个有吸引力的干预措施 他们面临着与种族和贫困相关的无数社会挑战，同时被期望学习如何 管理复杂的慢性病。这份提案描述了一项为期四年的综合研究和教育 计划定制和试点测试由我的主要导师开发的现有问题解决干预措施，以 改善患有SCD的青少年的自我管理和过渡准备。我的具体研究目的是： 1)对患有SCD的青少年及其父母进行焦点小组调查，以确定合理的干预目标 问题解决策略如何影响SCD自我管理；2)定制一般性问题解决 基于似是而非的提高青少年SCD患者自我管理的具体功能模型 在我们的第一个目标中确定的干预目标；以及3)对量身定做的 干预，以优化干预的内容和交付，通过一系列迭代 质量改进计划-做-研究-行动循环。我的教育目标是在1)获得额外的培训 健康行为的改变，包括青少年的正常发育，以及以解决问题为基础的认知 行为改变策略；2)干预发展，包括使用定性方法加强 文化能力；以及3)临床试验设计，包括严格的试验方法和设计 进行最终的审判。这个奖项的结果将为我的长期职业目标做好准备 独立调查员专注于制定和评估干预措施，以改善 患有SCD的青少年。这个应用程序的研究直接建立在我以前的工作基础上，我以前的工作主要集中在 在SCD中衡量过渡准备情况并制定过渡质量度量标准。我已经准备好了一个 在支持性研究环境中的经验丰富的指导团队，帮助我获得专业知识 在这项工作和我的长期职业目标中取得成功所必需的。这一项目的成果将引领 直接提供给后续拨款，以实施我们量身定做的干预的多站点RCT，并将帮助建立我的 作为SCD的独立调查员和转型专家的职业生涯。

PROJECT SUMMARY Mortality in sickle cell disease (SCD) has shifted away from childhood and to young adulthood, with patients facing an increased risk of early mortality after leaving pediatric care. Lack of transition preparation and poor support for the development of self-management skills play a significant role in the adverse transition outcomes in this vulnerable population. It is therefore imperative to develop novel methods of self-management support to prepare adolescents with SCD to manage their own health prior to leaving pediatric care. Problem solving, a key component of many chronic disease self-management programs, helps individuals overcome barriers to self-management. This makes problem solving an appealing intervention for adolescents with SCD who face myriad social challenges associated with race and poverty while being expected to learn how to manage a complicated chronic disease. This proposal describes a four year integrated research and education plan to tailor and pilot-test an existing problem solving intervention developed by my primary mentors to improve self-management and transition readiness in adolescents with SCD. My specific research aims are to: 1) conduct focus groups of adolescents with SCD and their parents to identify plausible intervention targets for how problem solving strategies could impact SCD self-management; 2) tailor the generic problem solving model to the specific function of improving self-management for adolescents with SCD based on the plausible intervention targets identified in our first aim; and 3) conduct a single-arm adaptive pilot test of the tailored intervention in order to optimize the content and delivery of the intervention through an iterative series of quality improvement Plan-Do-Study-Act cycles. My educational objectives are to gain additional training in 1) health behavior change, including normal adolescent development, and problem solving as a cognitive-based behavior change strategy; 2) intervention development, including the use of qualitative methods to enhance cultural competency; and 3) clinical trial design, including rigorous pilot methodologies and the design and conduct of definitive trials. The results of this award will prepare me for my long term career goal as an independent investigator focused on developing and evaluating interventions to improve transition for adolescents with SCD. The research in this application builds directly on my prior work which has focused on measuring transition readiness and developing quality metrics for transition in SCD. I have put together an experienced mentoring team within a supportive research environment to help me gain the expertise necessary to be successful in this work and in my long term career goals. The results of this project will lead directly to a subsequent grant to conduct a multi-site RCT of our tailored intervention and will help establish my career as an independent investigator and expert in transition in SCD.