Descriptive and Clinical Analysis of Behavioral Services to Enhance Readiness for Transition to Adult Medical Care in Youth with Sickle Cell Disease

Principal Investigator: Keith Slifer

From a health care systems perspective, one of the main challenges for adolescents with sickle cell disease (SCD) is transitioning from pediatric to adult care. Interdisciplinary transition programs have emerged to promote a smooth transfer of care. The inclusion of behavioral psychology services within such programs can assist in the promotion of age-appropriate disease management and behavioral adjustment.

As a component of an interdisciplinary transition program for adolescents seen by pediatric hematology patients with SCD aged 8-22 are offered behavioral psychology services during their outpatient appointments. Behavioral psychology aims to prepare patients for the transition to adult services by identifying and anticipating potential barriers to transition and assisting with development of individual/family coping skills to overcome transition barriers.

This study will aim to describe and evaluate the role of behavioral psychology in an interdisciplinary SCD transition clinic. All interventions have been conducted as part of clinical treatment. Descriptive data, including frequency of referral concerns, acceptance of referrals, associations with sickle cell type and disease severity, and cognitive-behavioral interventions will be obtained from a retrospective chart review of visit notes, which are routinely completed for the benefit of the patient and to enhance interdisciplinary coordination of care.

This IRB is submitted to obtain approval to transfer these clinical data into a de-identified database that will allow for professional conference presentation and journal publication of our descriptive and clinical analysis.