Patients with sickle cell disease (SCD) experience a higher risk of morbidity and mortality during the transition from adolescence to adulthood. This study, published in the Journal of Pediatric Hematology/Oncology, analyzed the factors associated with this transition.
A total of 59 study participants were recruited from a large hospital system and the community. The participants included 21 adolescents and young adults with SCD, 17 caregivers, 9 pediatric providers, 6 adult providers, and 6 emergency providers.
The participants were interviewed on several topics: access to primary and specialized care, the transition from pediatric to adult care, pain control beliefs and practices, and emergency department experiences. These data were coded and analyzed using domains taken from the Consolidated Framework for Implementation Research (CFIR).
Ultimately, it was found that multiple CFIR domains were involved in the transition from pediatric to adult care for SCD. These domains included inner setting, outer setting, individual characteristics, and intervention characteristics. These results were used to inform a transition framework to improve SCD care practices at the local level.
The researchers concluded that multilevel barriers and facilitators impact a child’s transition from pediatric to adult SCD care. More research on this topic is needed to optimize SCD care for adolescents and young adults .
Source: Calhoun, C., Luo, L., Baumann, A. A., Bauer, A., Shen, E., McKay, V., Hooley, C., James, A., & King, A. A. (2021). Transition for adolescents and young adults with sickle cell disease in a US Midwest urban center. Journal of Pediatric Hematology/Oncology. https://doi.org/10.1097/mph.0000000000002322