Supported by the American Society of Hematology (ASH), the first set of recommendations aimed at increasing capacity for specialized care for adults living with sickle cell disease (SCD) have recently been published in Blood Advances. SCD is a debilitating, lifelong disease with severe complications beginning early in life. Given improvements in care, most children with SCD survive into adulthood. Across the United States, surveys suggest significant gaps and dissatisfaction with adult sickle cell care for reasons such as difficulties with access, perceived discrimination, and lack of clinician confidence and knowledge in managing SCD complication. The proposed recommendations codify the components of establishing SCD adult care centers. These include:

• Multidisciplinary, team-based, evidence-guided care that is coordinated throughout the institution.
• The SCD center as the recognized authority for managing SCD within the institution.
• A physician lead who is considered an SCD specialist.
• One or more social workers, a patient coordinator, and dedicated nursing staff.
• The ability to offer acute and chronic pain management, transfusion, and access to specialists.

The paper makes recommendations for additional important, but not required, personnel such as clinic managers, behavioral health staff and psychologists, physical and occupational therapists, and pharmacists. Altogether, the recommendations define comprehensive care for SCD as team-based, holistic, and tailored to the unique needs of individuals with SCD.

More information: Blood Advances, ASH news