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Although sickle cell disease is the most common inherited blood disorder in the US, there are still knowledge and prioritization gaps that need to be addressed.
Despite emerging therapies to treat sickle cell disease in recent years. there is still a great need to optimize patient care through increased collaboration between emergency physicians, hematologists, and patients and their families.
It is certainly understood that sickle cell disease is a relatively uncommon condition, and yet it is the most common inherited blood disorder in the United States.
Due to the rarity of the disease, most emergency physicians do not treat such patients in large numbers. These physicians, therefore, may feel unconfident with managing all aspects of the disease.
And further, the ongoing coronavirus disease 2019 (COVID-19) pandemic has further exacerbated gaps in care and health disparities that have long plagued the sickle cell population. These gaps may extend into pain management, prevention, care coordination, and attention to social needs.
This past September, The Office of Minority Health of the US Department of Health and Human Services (HHS) sponsored the sickle cell disease special supplement in Annals of Emergency Medicine. In their forward, they stressed the importance of sickle cell disease awareness, especially since it has seemingly lacked a degree of prioritization among the medical community.
Furthermore, they highlighted federal efforts to help healthcare providers, especially emergency physicians, bridge these knowledge and prioritization gaps.
For example, they referenced the SCD Training and Mentoring Program (STAMP), a 12-part series taught by hematologists and which covers basic topics of sickle cell disease care. The program is offered to emergency physicians and primary care providers using the Project Extension for Community Healthcare Outcomes (Project ECHO) telehealth platform.
One of the goals of this program is to recruit from national health care associations, providers from medium-sized cities, and sickle cell advocacy organizations. Ultimately, according to the authors, fostering an atmosphere of collaborative opportunities is an important step in improving sickle cell care.
In addition to the STAMP program, there have been coordinated efforts to enhance the voice and perspectives of patients so that others can more fully understand the patients’ perspective in navigating the healthcare system.
Other initiative included increasing hydroxyurea adherence using financial incentives for providers and developing new gene therapies and treatments.
Thus, the authors emphasized the need to continue listening intently to individuals with sickle cell disease and their patients.
“In ED settings, such clear and open communication is crucial for establishing trust, the cornerstone of the patient-physician relationship, which not only affects the quality and effectiveness of care but also can counter previous experiences and assumptions,” they wrote.
It becomes essential for the emergency medicine community to partner with hematologists, primary care providers, federal agencies, sickle cell disease advocacy groups, as well as other stakeholders.
“We encourage wide adoption of warm handoffs between emergency physicians and hematologists, improved awareness and implementation of evidence-based treatment guidelines, and comprehensive coordination of care and supportive services in communities,” they concluded
The article, “The State of Sickle Cell Disease Care in the United States: How Can Emergency Medicine Contribute?” was published online in US National Library of Medicine.