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Although sickle cell was first described more than 100 years ago and more than 100,000 individuals in the US are living with sickle cell disease, healthcare providers still lack basic knowledge of the key components in providing care for individuals with sickle cell. This often leads to poor health outcomes including stigmatization of patients with sickle cell seeking care. Evidenced-based curriculum should be available ...more »
Sickle cell is a genetic disease with lifelong health consequences for affected individuals and their families. Interventions for individuals with sickle cell must be patient and family-centered.
Symptom management is a significant challenge for individuals living with sickle cell. In most cases, sickle cell research in symptom management focuses on pain. Although important, many other symptoms such a fatigue, anxiety, and depression need to be identified and intervened on to improve the quality of life for individuals living with sickle cell disease.
• There is a need to develop and support formal programs to provide follow-up care for newborns who test positive for the sickle cell trait or sickle cell disease upon screening. While newborn screening programs exist nationwide, healthcare providers report that often, screening is conducted only upon request (likely related to cost) and there is usually no follow-up afterwards. Interventions are also needed further ...more »