Factors Predicting Transition Readiness in Youth with Sickle Cell Disease

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Project Summary / Abstract Transition from pediatric to adult healthcare settings poses significant risks to morbidity and mortality for adolescents and young adults with sickle cell disease. Transition readiness is the acquisition of disease- specific knowledge and self-management skills required for successfully transitioning adolescents and young adults (AYA) from pediatric to adult healthcare. To date, few studies have looked at factors that may influence transition readiness, a measure of disease-specific knowledge and self-management, in AYAs with sickle cell disease. This limits healthcare providers’ and researchers’ abilities to develop interventions specific to the unique needs of the population. The aim of this correlational, cross-sectional study is to examine the relationships between decision-making involvement, self-efficacy of sickle cell disease self-management, and transition readiness in AYAs with sickle cell disease prior to transition to adult healthcare settings. This research project is consistent with National Institute of Nursing Research’s mission to increase development of self-management. The specific aims of this project are to describe factors which influence the AYA’s level of transition readiness and ability to independently care for themselves as they enter the adult healthcare setting. This research project also aligns with the Healthy People 2020 goal to ensure the “development, health, safety, and well-being of adolescents and young adults”; this study will assess gaps in our understanding of factors influencing transition readiness which prevent us from effectively intervening to improve health outcomes after transition to the adult healthcare setting. This cross-sectional study is being guided by the Individual and Family Self-Management Theory framework that asserts development of self-management is influenced by a variety of factors within the family and the individual. A total of 50 family caregiver-child dyads will be utilized as participants for this study based upon the assertions of this theory and a power analysis. Recruitment will occur at an urban, academic children’s hospital in Washington, District of Columbia. One-time data collection will utilize three validated measurement tools, AYA self-report, caregiver self-report, and the electronic medical record. Analysis will be conducted using Statistical Package for Social Sciences Version 25 with the assistance of a statistician. Long-term benefits of this research include increased understanding of factors that can help to predict transition readiness in AYA with sickle cell disease. Results of this project will assist in designing future research, interventions, and evidence-based projects to improve the transitions of adolescents and young adults with sickle cell disease.