https://orcid.org/0000-0002-1270-8132
Key Points
In adolescents with SCD, higher scores on knowledge related domains were associated with higher confidence in managing their health
Youth with SCD indicated a preference for starting transition education in their mid-teens, at least twice a year, using various approaches
Disease and management knowledge is crucial for individuals with sickle cell disease (SCD) transitioning from a pediatric to adult healthcare 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. Semi-structured interviews provided insights on education gaps and preferences. Eighty-four individuals completed the transition readiness assessment. Younger patients (≤18 years) had significantly lower scores on the appointment (1.1 (sd=0.7) vs 1.6 (sd=0.6), p = 0.007) and insurance (0.5 (sd=0.7) vs 1.5 (sd=1.1), p = 0.0006) domains as compared to older (>18 years) individuals. Those very confident in the ability to manage their healthcare scored significantly higher in disease knowledge (2.4 (sd=0.5) vs 2.0 (sd=0.7), p-value = 0.01), medication management (2.5 (sd=0.6) vs 2.1 (sd=0.4), p = 0.0001), appointments (1.4 (sd=0.7) vs 0.9 (sd=0.5), p-value = 0.0006), and insurance (0.9 (sd=0.9) vs 0.5 (sd=0.8), p-value = 0.02) than those who were not. Semi-structured interviews with nine young adults revealed a preference for transition education to start in their mid-teens, 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.
