Randomized Controlled Trial (RTC) testing the efficacy of a telehealth adaptation of the Cognitive-Remediation of Executive and Adaptive Deficits in Youth (C-READY) intervention to prepare adolescents with sickle cell disease for transition of care.
Diagnosis of SCD (all genotypes)
Active follow-up at Children's of Alabama Hospital
Ages 10-18
English-speaking
History of seizures or overt stroke
History of Intellectual Disability or Autism Spectrum Disorder
Inability to participate in the MRI scan, such as metal implants, neurostimulators, claustrophobia
Currently on psychotropic medications
Parallel
CREADY (Cognitive-Remediation of Executive and Adaptive Deficits in Youth)
BehavioralManualized cognitive remediation intervention that includes 1) skills-based remediation (metacognitive training), 2) parent training, and 3) cognitive behavioral approaches. Intervention targets self-management and goal-setting skill building to promote independence in activities necessary for transition of care.
Transition Readiness
Questionnaire assessing how knowledgeable the youth is about their health condition and the skills necessary for self-management and self-advocacy
Transition Readiness
Questionnaire assessing how knowledgeable the youth is about their health condition and the skills necessary for self-management and self-advocacy
Cognitive Assessment
A global cognitive deficit score will be calculated that assesses intellectual functioning, working memory, processing speed, attention, language, and executive functioning. The global cognitive deficit score is calculated as an average of test scores and normalized to a scale of 0-5, with 0 indicating normal functioning and 5 indicating severe deficits.
Cognitive Assessment
A global cognitive deficit score will be calculated that assesses intellectual functioning, working memory, processing speed, attention, language, and executive functioning. The global cognitive deficit score is calculated as an average of test scores and normalized to a scale of 0-5, with 0 indicating normal functioning and 5 indicating severe deficits.
Neuroimaging
Brain scan (MRI) of structural and functional connectivity
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