Although cystic fibrosis (CF) is the most common life-limiting genetic disease in the Caucasian population, survival has increased such that many more children and adolescents with CF are living well into adulthood. This increased survival has led to new opportunities and challenges in the care of adolescents and young adults with CF. One major challenge is how best to prepare adolescents and families for the transition from pediatric to adult-centered health care during a time in which CF disease may worsen and challenges of chronic disease self-management increase. Dr. Sawicki is an Assistant Professor of Pediatrics at Harvard Medical School and a pediatric pulmonologist at the CF Center at Children's Hospital Boston. His principal areas of interest are health outcomes and quality improvement, particularly focused on the vulnerable period of health care transition for adolescents and young adults with CF. Dr. Sawicki's immediate career goal is to develop expertise in clinical outcomes research of children with complex chronic medical conditions. He completed a fellowship in pediatric health services research, but requires further training through formal coursework in advanced research methods and analytic techniques. He will work with a mentorship team led by national experts in the fields of CF health outcomes research, qualitative research, and health care transition. His long-term career goal is to become an independent researcher with expertise in health outcomes and healthcare delivery systems for adolescents with CF, with the long-term objective of investigating how interventions during adolescence can lead to sustained improvements in self-management and health outcomes when these patients reach adulthood. The work and research in his career development proposal complement the mission for NHLBI. Dr. Sawicki will perform a study of health care transition among adolescents and young adults with CF.
The aims of this proposal are: 1) To understand the barriers and facilitators of transition to adult care as perceived by adolescents with CF and their parents. 2) To examine longitudinal changes in transition readiness among a cohort of adolescents with CF, and 3) To examine the impact of illness perception, treatment beliefs, social support, disease severity, and health-related quality of life on the development and progression of health care transition readiness in a cohort of adolescents with CF. He will use both qualitative and longitudinal survey methodology in this project. This study will substantially contribute to the understanding of barriers and facilitators for health care transition among adolescents and young adults with CF. The results of this research may have significant implications for the delivery of healthcare in CF. In addition, this work may serve as a model for the study of health care transition for other populations of young adults with chronic medical conditions of childhood onset.
Adolescents and young adults with chronic diseases such as cystic fibrosis need to transition their health care to adult-centered health systems as they get older. The goals of this research project are to understand the barriers and facilitators of this transition process from the perspective of adolescents and young adults with cystic fibrosis. The research will provide important information that can be used in designing health care transition programs for adolescents and young adults with chronic medical conditions.
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