Study of the C-READY Cognitive Remediation Program via Telehealth to Help Adolescents with Sickle Cell Disease Prepare for Adult Care Transition

What this Trial Is About

This research aims to evaluate the effectiveness of a telehealth version of the Cognitive-Remediation of Executive and Adaptive Deficits in Youth C-READY intervention for adolescents with sickle cell disease SCD. Cognitive impairment is common and affects over half of children with SCD, impacting their ability to make decisions needed for a successful transition to adult self-care. The study addresses challenges caused by cognitive difficulties and social health disparities in preparing youth for this transition. The study involves a manualized, individualized program delivered over 4 weeks through eight 60-minute one-on-one telehealth sessions between the adolescent and a trained therapist. Caregivers participate through weekly phone calls to support and encourage progress. Participants focus on building independence in skills like managing medications, pain, sleep, and daily health routines. The trial randomly assigns 120 youths aged 10 to 18 into two groups one receives the intervention immediately, and the other waits 4 weeks before starting the same program. During the study, participants will be assessed on transition readiness skills and cognitive abilities, including brain imaging to evaluate changes in brain function. Measurements occur at 4 weeks and again 4 months after the intervention. The study aims to develop an accessible and scalable intervention to improve self-care and quality of life for youth with SCD. The total participation time varies by group and includes follow-up assessments to monitor progress and safety.

Cognitive Remediation Intervention to Prepare for Transition of Care