Project Description:
There has been an increased focus on understanding how to best support the transition to the adult health care system for adolescents and young adults (AYA) with and without special health care needs. However, there has been little research done on how readiness for transition varies across conditions and contexts or the role that comprehensive health literacy (i.e., the cognitive and social skills needed to communicate and articulate health needs and preferences; Massey, Prelip, Calimlim, Quiter, & Glik, 2012, page 2) might play in transition readiness across different populations. This study aims to examine transition readiness (health knowledge and self-report of health-related skills) and health literacy, as indicators of comprehensive health literacy, in healthy AYA and AYA with special health care needs and developmental disabilities. AYA from five groups will be compared: Type 1 Diabetes, Turner Syndrome, Autism Spectrum Disorder, Spina Bifida, and healthy AYA. Participants (ages 12 to 21) will provide demographic information and respond to questions that assess health knowledge, health-related skills and developmental stage. Their health literacy level will be assessed using a validated tool. The study is being conducted with approximately 200 participants (40 from each group). Participant responses to questions about their health (e.g., medications, diagnoses) will be compared to electronic records to establish accuracy. Findings from this study will demonstrate baseline health literacy and transition readiness and describe any differences among the five groups. Results will inform future studies using additional measures and future implementation of a transition readiness policy that can apply broadly to AYA with and without special health care needs. Findings will be used to gain additional grant funding, and for publications.
 
