Assessing Disease Knowledge and Self-Management in Youth With Sickle Cell Disease Prior to Transition.
Barbara Speller-BrownMaureen VartyLisa ThanielMarni B JacobsPublished in: Journal of pediatric oncology nursing : official journal of the Association of Pediatric Oncology Nurses (2018)
Most patients and parents had adequate basic knowledge regarding SCD. AYAs lack the disease knowledge necessary to transition care away from parents to become more independent. An assessment for transition readiness should be ongoing to include disease-specific knowledge and self-management skills.