Transition for Adolescents and Young Adults With Sickle Cell Disease in a US Midwest Urban Center: A Multilevel Perspective on Barriers, Facilitators, and Future Directions.

BACKGROUND: Sickle cell disease (SCD), an inherited red blood cell disorder, primarily affects African Americans in the United States. Adolescents and young adults with SCD (AYA-SCD) are at risk of high morbidity and mortality when transitioning from pediatric to adult care. The goal of this qualitative study was to understand factors associated with optimal implementation of the AYA-SCD transition. METHODS: Participants were recruited from a large hospital system and the community. Interview guides included topics on access to primary and specialized care, beliefs and practices related to pain control, transition from pediatric to adult care, and patient experiences in the emergency department. Data were coded and analyzed using an inductive thematic coding approach in combination with a deductive coding approach using domains from the Consolidated Framework for Implementation Research (CFIR). RESULTS: Fifty-nine participants, including 21 AYA-SCD from both the pediatric and adult clinics, 17 caregivers, 9 pediatric SCD providers, 6 adult SCD providers, and 6 emergency department providers, completed 11 focus groups and 5 semistructured interviews. Results identified multiple factors within the domains of CFIR including the outer setting, inner setting, individual characteristics, and intervention characteristics. Results were incorporated into a transition framework to inform local practice improvement. CONCLUSION: Our study highlights the importance of multilevel barriers and facilitators for AYA-SCD transition from pediatric to adult care. Future studies could use implementation science frameworks to understand local context and identify strategies and intervention characteristics to improve transition programming. These efforts will ultimately reduce health disparities and ensure health equity.

Psychometric Properties of the Infant Toddler Activity Card Sort.

The Infant Toddler Activity Card Sort (ITACS) is a new measure that engages caregivers in goal development by measuring participation in early childhood. Initial evaluation of the ITACS is required to assess its psychometric properties. To evaluate test-retest reliability, concurrent validity, and between-group differences of the ITACS. Caregivers (N = 208) of children 0-3 years, who were typically developing (TD) or had a developmental delay (DD), completed the ITACS and Pediatric Evaluation of Disability Inventory-Computer Adaptive Test (PEDI-CAT) with repeat assessment after 2 weeks later (n = 117). The ITACS demonstrated moderate concurrent validity with the PEDI-CAT. Children with DD had significantly more activity concerns on the ITACS than TD. Adequate test-retest reliability was not achieved. The ITACS is a useful tool for identifying caregiver concerns in activity engagement; interventions can be tailored to address concerns and increase participation in childhood routines.