A mixed methods study to understand the role of knowledge in transition among youth with sickle cell disease. Blood Adv 2025 Sep 09;9(17):4477-4485
Date
06/24/2025Pubmed ID
40554418Pubmed Central ID
PMC12410538DOI
10.1182/bloodadvances.2025015984Scopus ID
2-s2.0-105014730045 (requires institutional sign-in at Scopus site)Abstract
Disease 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.
Author List
Singh A, Dasgupta M, Nataliansyah MM, Steiner N, Karst J, Miller M, Field JJ, Azul M, Pezzin LE, Brandow AMAuthors
Melissa Azul DO Assistant Professor in the Pediatrics department at Medical College of WisconsinJoshua J. Field MD Professor in the Medicine department at Medical College of Wisconsin
Jeffrey S. Karst PhD Associate Professor in the Pediatrics department at Medical College of Wisconsin
Mochamad M. Nataliansyah MD, PhD Assistant Professor in the Surgery department at Medical College of Wisconsin
Liliana Pezzin PhD, JD Director, Professor in the Institute for Health and Humanity department at Medical College of Wisconsin
Ashima Singh PhD Assistant Professor in the Pediatrics department at Medical College of Wisconsin
MESH terms used to index this publication - Major topics in bold
AdolescentAdult
Anemia, Sickle Cell
Child
Female
Health Knowledge, Attitudes, Practice
Humans
Male
Transition to Adult Care
Young Adult
