Sickle cell disease, while considered a rare disease, is the most common genetic blood disorder and affects approximately 100,000 Americans, primarily of African and Hispanic descent. Individuals with sickle cell disease can experience multiple life-threatening problems during their lifetime. Much of their acute care is delivered in the emergency department (ED), yet patients often say they had a poor experience in the ED.
In recognition of the need to improve the care offered to patients with sickle cell disease in the ED, the American College of Emergency Physicians in collaboration with multiple public, private and professional partners created the Emergency Department Sickle Cell Care Coalition. By promoting evidence-based emergency care and optimizing provider-patient-family communication in the delivery of emergency care for patients with sickle cell disease, the coalition ultimately seeks to provide a national forum dedicated to the improvement of the emergency care of patients with sickle cell disease in the US.
The Emergency Department Sickle Cell Care Coalition focused on:
- Dissemination of research findings to local, regional and national stakeholders;
- Education of ED providers and patients regarding the appropriate management of sickle cell disease-related pain and other complications;
- Advocacy efforts directed towards appropriate federal, state and local governments, and professional organizations;
- Outreach and educational efforts to patients and families working to develop community partners; and
- Development of appropriate metrics to improve the emergency care of patients with sickle cell disease.
Participating Organizations in the Emergency Department Sickle Cell Care Coalition:
- American College of Emergency Physicians
- American Academy of Pediatrics
- American Society of Hematology
- American Society of Pediatric Hematology/Oncology
- Centers for Disease Control and Prevention
- Emergency Nurses Association
- Health Resources and Services Administration
- The Joint Commission
- National Heart, Lung and Blood Institute
- Sickle Cell Disease Association of America
- Sickle Cell Foundation of Tennessee