Transition from paediatric to adult care for patients with sickle cell disease

Advances achieved over the last three decades have transformed sickle cell disease (SCD) from a fatal childhood disease to a long-term chronic condition. Consequently, patients must transition from paediatric to adult care. The transition is a high-risk period associated with increases in hospital admissions and death. The factors underlying this increased risk include not only characteristics of the disease itself, with the accumulation of disabilities and progression of organ damage, but also psychological factors and a frequent paucity of adult-care resources for SCD. Leaving the familiar paediatric team causes marked anxiety in many patients. The transition of care coincides with the many other transitions that characterize the emotional, social and academic development of adolescents. The shift from protection by parents and physicians to independent self-management may be difficult. Finally, young adults may have limited access to health insurance. In recent years, many medical groups have suggested the development of transitioning programmes combining transition schedules, printed and web-based materials, and, in some cases, transition-dedicated physicians, nurses and psychologists. Transition must begin early, involve both the paediatric and the adult team, direct appropriate attention to the parents and occur over a period of several years. Evaluations of these programmes are urgently needed.