The American Society of Hematology (ASH), the world’s largest professional society dedicated to furthering the understanding, diagnosis, treatment, and prevention of blood disorders, announced the publication of the ASH 2020 Guidelines for Sickle Cell Disease Management of Acute and Chronic Pain, the new installment of the Society’s evidence-based practice guidelines on the disease.
Pain is the most common complication of SCD and it significantly decreases daily quality of life. Severe pain is the leading cause of emergency department visits and hospitalizations for people with SCD. Individuals with pain from SCD often don’t get the care they need because comprehensive information about medications and therapies had not been readily available. This guideline and others in the collection, published in ASH’s journal Blood Advances, address clinical challenges by providing the first evidence-based recommendations to help individuals with SCD and their providers make the most informed decisions for personalized care.
SCD is the most common inherited red blood cell disorder in the United States, affecting an estimated 100,000 people. According to the Centers for Disease Control and Prevention, SCD affects one out of every 365 Blacks or African Americans and one out of every 16,300 Hispanic Americans. In individuals with SCD, the red blood cells, which are normally round, become crescent or sickle shaped. These abnormally shaped cells break apart easily, clump together, and stick to the walls of blood vessels, blocking the flow of blood and causing excruciating pain. In addition, individuals with SCD can experience joint and organ damage, stroke, and reduced life expectancy. On top of the immense physical burden of the disease, individuals often cannot access the care they need because SCD is largely misunderstood by medical professionals. In fact, 20% of family physicians report feeling comfortable caring for individuals with SCD .
“We’ve seen remarkable advances in the therapies available for sickle cell disease and its complications, with two new FDA-approved therapies last year alone and many more in development. Yet care is often the responsibility of primary care, family, and emergency room physicians and nurses, and the community has long expressed a strong need for guidance that can help them deliver the best care for their patients,” said Robert Liem, MD, chair of the ASH Sickle Cell Disease Guideline Coordination Panel and director of the Comprehensive Sickle Cell Disease Program at the Ann & Robert H. Lurie Children’s Hospital of Chicago. “There is no one-size-fits-all approach to treating sickle cell disease, and these guidelines provide evidence-based recommendations about how to individualize care in accordance with individuals’ preferences and values.”
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In partnership with the Evidence-Based Practice Research Program at Mayo Clinic, the ASH Guidelines on SCD were developed using the GRADE methodology to ensure the highest standards for trustworthiness. ASH brought together 61 clinical experts, five methodologists, and 10 patient representatives to identify best practices for the management of acute and chronic complications of SCD and ways to improve the quality of care for patients.