Only a few decades ago, a child with sickle cell disease (SCD) had a life expectancy of 14 years. Today, those with SCD can live into adulthood. With early identification and multi-disciplinary, coordinated treatment many patients with SCD can effectively manage their disease.
However, many patients do not have access to coordinated care and rely on emergency room visits to manage pain, where they may encounter confusion about the disease and delayed treatment for pain, leading to longer hospitalizations and distress. Furthermore, because in the past many patients with SCD died at an early age, caring for the disease has focused in the pediatric arena, with adult care lagging behind. This makes assistance with the transition from pediatric care to adult care crucial.
Multi-sector collaboration as well as increasing education about the disease, ensuring that screening recommendations are met and managing SCD with proven treatment protocols are all needed to improve care across the lifespan for individuals with SCD.