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.
Survivors of congenital heart disease (CHD), the most common congenital condition, are at risk for developing serious cardiovascular complications as they age. Many of these complications are preventable or amenable with early detection and proper treatment. However, little is known about the factors affecting how well adolescents and young adults with CHD care for themselves. The current study aims to determine what factors unique to the individual and to the individual's interpersonal relationships account for the most variability in self- management. The results of this study will inform future research as to what factors should be investigated over time as individuals with CHD transition to adult medical care, leading to identification of factors to target for intervention. Ultimately, knowledge from this lie of research will improve the health and quality of life of CHD survivors, as well as reduce unnecessary burden on the medical system.
| Schiele, Steven E; Emery, Charles F; Jackson, Jamie L (2018) The role of illness uncertainty in the relationship between disease knowledge and patient-reported outcomes among adolescents and adults with congenital heart disease. Heart Lung : |
