Young adults (16–25 years) with sickle cell disease (SCD) experience increased rates of death during the time of transition from pediatric to adult care, and they use more healthcare services (e.g., visit the doctor, go to the emergency department) than all other age groups. While community health worker (CHW) programs and mobile health (mHealth) applications have shown great potential for this vulnerable population, it is currently unknown if these interventions actually improve the lives of the people who use them.
Through a randomized clinical trial design, this study will compare the effectiveness of two self-management support interventions—CHW and mHealth—versus enhanced usual care to improve health-related quality of life and acute care use for transitioning youth with SCD, and identify and quantify mediators and moderators of intervention treatment effects. All research design and protocol planning, implementation, data collection, data analysis, and dissemination strategizing will be performed with our multistakeholder team, which includes young adult patients with SCD, parents, pediatric and adult clinicians, payers, policy makers, and community and advocacy groups.
*All proposed projects, including requested budgets and project periods, are approved subject to a programmatic and budget review by PCORI staff and the negotiation of a formal award contract.