Expectations and Outcomes of Healthcare Transition in Adolescents and Young Adults with Cystic Fibrosis

PROJECT SUMMARY/ ABSTRACT. Adolescents and young adults (AYAs) with cystic fibrosis (CF) are at risk for gaps in continuity of care and poor clinical outcomes during the transition from pediatric to adult outpatient care. Healthcare transition is the planned and purposeful movement from pediatric to adult care. Across CF care centers, transition preparation practices are not standardized and poor outcomes such as gaps in recommended care and subsequent clinical deterioration still occur. This lack of standardization is in part due to insufficient evaluation of the outcomes of current transition preparation programs. Additionally, there is a gap in the qualitative literature on AYA and parent perspectives of healthcare transition in the United States. Filling these gaps would help to promote the creation of standardized, evidence based and AYA and family centered transition programs that would ultimately improve healthcare transition outcomes for AYAs with CF. The aims of this study are to evaluate the post-transition outcomes of a current transition preparation program for AYAs with CF and to explore adolescents with CF and parent expectations and perceptions of healthcare transition. This study aligns with the National Institute of Nursing Research priority area of self-management. Additionally, this study aligns with the Healthy People 2020 goal to ?Improve the healthy development, health, safety, and well-being of adolescents and young adults?. Ultimately this study will help to promote successful, independent illness self-management and improve the transition preparation process for AYAs with CF. The expanded socioecological model for adolescent and young adult readiness for transition will be used to guide this mixed- methods study. This framework provides a holistic view of healthcare transition by addressing the multiple factors that influence transition readiness and post-transition outcomes. For the quantitative aim of this study we will examine biomedical outcomes (lung function and nutrition status) and behavioral outcomes (continuity of recommended outpatient care and engagement in care) comparing AYAs who participated in a structured transition preparation program compared to those who did not at a large, urban, academic medical center. We will use data from the Cystic Fibrosis Foundation Patient Registry and CF R.I.S.E. transition program participation records to achieve this aim. The qualitative aim will be achieved though semi-structured interviews with 15 adolescents with CF/parent dyads. This study will be supported by a strong mentorship team and will benefit from the many resources available at Columbia University School of Nursing. An established collaborative relationship with 2 CF Care Centers (1 adult, 1 pediatric) will facilitate recruitment and data access. Results of this study will add to the literature on healthcare transition and promote the development of AYA and family centered transition preparation programs to improve transition outcomes for AYAs with CF.