Self-Management and Transition among Adolescents and Young Adults with Congenital Heart Disease

 描述(由申请人提供)：青少年和青壮年先天性心脏病患者的自我管理和转变项目摘要/摘要杰米·L·杰克逊博士是美国国立儿童医院和俄亥俄州立大学生物行为健康中心的研究助理教授。她的职业目标是成为一名独立的临床科学家，在先天性心脏病(CHD)过渡到成人医疗护理的个人中拥有疾病自我管理方面的专业知识。随着慢性病患者年龄的增长，他们必须对自己的医疗保健承担更多的责任，但对于许多疾病群体来说，在青春期坚持药物治疗方案的比例会下降。CHD是最常见的先天性疾病，由于医学的进步，目前有超过130万成年人患有CHD。尽管有大量的冠心病幸存者，但人们对影响这些人如何照顾好自己的因素知之甚少，特别是那些青少年和年轻人(AYACHD)。此外，随着年龄的增长，冠心病患者面临着许多心血管并发症的风险，其中一些是可以预防或可以治疗的。拟议的为期5年的以患者为导向的导师研究职业发展奖(K23)将通过导师关系为杰克逊博士提供对实现她的职业目标至关重要的培训，内容包括：(1)使用自我管理行为和认知功能的客观衡量标准，(2)过渡，包括实施纵向研究设计，(3)冠心病病理生理学和医疗护理，以及(4)高级统计培训。利用社会生态框架，杰克逊博士提议的研究旨在确定导致 AYACHD在自我管理行为及其相互关系上的变异性最大。参与者将包括150名患有中度和严重心脏损害的AYACHD(年龄15-25岁)，他们将完成研究问卷，接受简短的认知评估，使用电子药物监测系统(衡量服药依从性)3个月，佩戴加速计14天(衡量体力活动)，并参加3次24小时回忆饮食访谈。在被招募的青少年(15-17岁)中，20名将被纳入纵向试点数据收集，以进行纵向方法的动手培训。Kathryn Vannatta博士是国际公认的儿科心理学家，在纵向数据收集方面经验丰富，她将担任杰克逊博士的现场导师。她的共同导师包括肯塔基大学心肺疾病自我管理生物行为研究中心主任黛布拉·莫泽博士，以及1型糖尿病患者过渡期专家维基·赫尔格森博士。还将提供关于饮食(Terry Lennie博士)和神经认知(Jennifer Bogner博士)评估的其他咨询，在医疗环境中实施过渡计划的暴露(Curt Daniels博士)，冠心病患者的解剖学和医学考虑(Daniels博士)，以及高级统计程序(Joseph Rausch博士)。除了让杰克逊博士做好准备，成为一名在向成人护理过渡的CHD幸存者中进行自我管理的临床科学家，目前的研究结果预计将为未来的纵向研究提供参考，这些研究将确定干预目标，以改善自我管理，并最终提高这些人的健康结果。

 DESCRIPTION (provided by applicant): Self-Management and Transition among Adolescents and Young Adults with Congenital Heart Disease PROJECT SUMMARY/ABSTRACT Jamie L. Jackson, PhD, is a Research Assistant Professor in the Center for Biobehavioral Health at Nationwide Children's Hospital and The Ohio State University. Her career goal is to become an independent clinician- scientist with expertise in disease self-management among individuals with congenital heart disease (CHD) transitioning to adult medical care. As people with chronic illness age, they must assume more responsibility for their healthcare, yet adherence to medical regimens declines in adolescence for many disease groups. CHD is the most prevalent congenital condition, and due to advancements in medicine, over 1.3 million adults are now living with CHD. Despite the large population of CHD survivors, little is known about factors that influence how well these individuals care for themselves, especially those who are adolescents and young adults (AYACHD). Furthermore, individuals with CHD are at risk for many cardiovascular complications as they age, some of which are preventable or amenable to treatment. The proposed 5-year Mentored Patient- Oriented Research Career Development Award (K23) will provide Dr. Jackson with training vital for achieving her career goals through mentorship on: (1) using objective measures of self-management behaviors and cognitive functioning, (2) transition, including the implementation of longitudinal study design, (3) CHD pathophysiology and medical care, and (4) advanced statistical training. Using a socio-ecological framework, Dr. Jackson's proposed study aims to identify the internal (within the individual) and external (interpersonal relationships) risk/protective factors that account for the most variability in self-management behaviors and their relationships with each other among AYACHD. Participants will include 150 AYACHD (ages 15-25) with moderate and severe cardiac lesions who will complete study questionnaires, undergo brief cognitive assessment, use an electronic medication monitoring system (measure of medication adherence) for 3 months, wear an accelerometer for 14 days (measure of physical activity), and participate in 3 24-hour recall dietary interviews. Of the adolescents recruited (ages 15-17), 20 will be included in a longitudinal pilot data collection for hands-on training in longitudinal methodology. Dr. Kathryn Vannatta, an internationally recognized pediatric psychologist with extensive experience in longitudinal data collection, will serve as Dr. Jackson's site mentor. Her co-mentors include Dr. Debra Moser, the Director for the Center of Biobehavioral Research in Self-Management of Cardiopulmonary Disease at the University of Kentucky, and Dr. Vicki Helgeson, an expert in transition among individuals with type 1 diabetes. Additional consultation will be provided on dietary (Dr. Terry Lennie) and neurocognitive (Dr. Jennifer Bogner) assessment, exposure to the implementation of transition programs in medical settings (Dr. Curt Daniels), anatomical and medical considerations for individuals with CHD (Dr. Daniels), and advanced statistical procedures (Dr. Joseph Rausch). In addition to preparing Dr. Jackson for independence as a clinician-scientist in self-management among survivors of CHD transitioning to adult care, the results of the current study are expected to inform future longitudinal studies that will identify targets for intervention to improve self-management and ultimately enhance health outcomes among these individuals.