Transitioning adolescents with sickle cell disease to adult-centered care

Efforts have been made to formalize transitioning of adolescents with chronic health conditions such as sickle cell disease (SCD), from child-centered care (CCC) to adult-centered care (ACC). A dearth of literature exists that examines the transition of adolescents with SCD or offers guidance for transitioning. This study sought to explore concerns, expectations, and needs regarding the transition from CCC to ACC and to generate a framework for transitioning. Separate focus groups were conducted with adolescents (n = 22), their parents (n = 22), and practitioners (n = 8). Focus group interviews revealed that concerns, expectations, and needs for adolescents and their parents were parallel. Adolescents and their parents had concerns about: (a) leaving a familiar setting and physician whom they trusted, (b) going to an adult provider who may or may not be familiar with managing sickle cell disease, and (c) establishing new family roles. Practitioners affirm the need for transitioning that prepares the adolescents and their families for ACC. Findings led to a draft framework for transitioning that which will be tested at a later date. The framework is based on an ecological perspective that includes physiologic, developmental and psychosocial, and educational/vocational components.