A mixed methods study to understand the role of knowledge in transition among youth with sickle cell disease.

abstractDisease and management knowledge is crucial for individuals with sickle cell disease (SCD) transitioning from a pediatric to adult health care facility. However, there is a lack of understanding regarding the specific education needed and its association with an individual's ability to successfully transition. This study aims to explore the association between SCD-specific transition readiness assessment scores, patient characteristics, and the perceived importance and confidence in the individual's ability to manage their health and transition to an adult doctor. Semistructured interviews provided insights on education gaps and preferences. Eighty-four individuals completed the transition readiness assessment. Younger patients (aged ≤18 years) had significantly lower scores on the appointment (1.1 [standard deviation (SD), 0.7] vs 1.6 [SD, 0.6]; P = .007) and insurance (0.5 [SD, 0.7] vs 1.5 [SD, 1.1]; P = .0006) domains as compared with older (aged >18 years) individuals. Those who were very confident in their ability to manage their health care had significantly higher scores in disease knowledge (2.4 [SD, 0.5] vs 2.0 [SD, 0.7]; P = .01), medication management (2.5 [SD, 0.6] vs 2.1 [SD, 0.4]; P = .0001), appointments (1.4 [SD, 0.7] vs 0.9 [SD, 0.5]; P = .0006), and insurance (0.9 [SD, 0.9] vs 0.5 [SD, 0.8]; P = .02), compared with those who were not. Semistructured interviews with 9 young adults revealed a preference for transition education to start in their midteens, at least twice a year, and using a combination of approaches. Additional themes identified included the desire for ongoing education, familiarity with the workflow and environment, access to care, and the importance of support systems during their transition.