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

 描述（由申请人提供）：患有先天性心脏病的青少年和年轻人的自我管理和过渡 项目摘要/摘要 Jamie L. Jackson 博士是全国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医生兼科学家，拥有先天性心脏病 (CHD) 患者向成人医疗护理过渡的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，他们必须承担更多的医疗保健责任，但许多疾病组在青春期时对医疗方案的依从性会下降。 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。尽管冠心病幸存者人数众多，但影响这些人（尤其是青少年和年轻人 (AYACHD)）自我护理程度的因素却知之甚少。此外，随着年龄的增长，患有先心病的人面临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研究职业发展奖 (K23) 将为 Jackson 博士提供对实现其职业目标至关重要的培训，具体方式包括：(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) 先心病病理生理学和医疗护理，以及 (4) 高级统计培训。杰克逊博士提出的研究旨在利用社会生态框架来确定内部（个人内部）和外部（人际关系）风险/保护因素。 AYACHD 中自我管理行为及其相互关系的变异性最大。参与者将包括 150 名患有中度和重度心脏病变的 AYACHD（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（衡量药物依从性）3 个月，佩戴加速度计 14 天（衡量身体活动），并参加 3 次 24 小时回忆饮食访谈。在招募的青少年（15-17 岁）中，20 名将被纳入纵向试点数据收集中，以进行纵向方法的实践培训。国际公认的儿科心理学家 Kathryn Vannatta 博士在纵向数据收集方面拥有丰富的经验，她将担任 Jackson 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 Debra Moser 博士和 1 型糖尿病患者过渡方面的专家 Vicki Helgeson 博士。我们还将提供以下方面的额外咨询：饮食（Terry Lennie 博士）和神经认知（Jennifer Bogner 博士）评估、了解医疗环境中过渡计划的实施（Curt Daniels 博士）、先心病患者的解剖和医学考虑因素（Daniels 博士）以及高级统计程序（Joseph Rausch 博士）。除了帮助杰克逊博士作为一名临床医生科学家独立做好向成人护理过渡的先心病幸存者的自我管理方面的准备外，目前的研究结果预计将为未来的纵向研究提供信息，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.