Sickle cell disease (SCD) is a genetic blood disorder placing children at risk for serious medical complications, early morbidity and mortality, and high health care utilization. In the United States, SCD affects primarily Black and Hispanic or Latine/x children. Hydroxyurea is 1 of only 4 disease-modifying treatments available for this devastating and life-threatening disease. National evidence-based SCD guidelines recommend the use of a shared decision-making approach to offer hydroxyurea to all children with sickle cell anemia as early as 9 months of age and children with SCD in the presence of complications. Hydroxyurea uptake remains low in this population, however, because parents or caregivers (hereafter referred to as parents) lack information about it and have concerns about its safety and potential long-term side effects (eg, cancer, infertility, birth defects). Also, clinicians may not have the training or tools to facilitate a shared discussion with parents that provides medical evidence and considers parent preferences and values.
