World Sickle Cell Day
Enhancing care for people living with Sickle Cell Disease
CLOSING THE GAPS
Improving Disparities and Quality of Care for ALL
Sickle Cell Disease (SCD), an inherited blood disorder that is more prevalent in people of African and Latinx/Hispanic descent, affects approximately 100,000 Americans, and sickle cell trait affects an estimated 2 million individuals. People living with SCD experience acute pain crises, dangerous infections, and other serious health problems that can damage every organ in the body, requiring providers who are knowledgeable and understanding.
However, widespread quality care for this population is tempered due to gaps in services. Some gaps originate from an ongoing shortage of trained specialists who are willing to take care of people with SCD, while others are due to lack of provider knowledge about up-to-date guideline-based best practices when treating this population. Check out these helpful resources from NICHQ for health professionals, patients and caregivers, and people living with SCD.
NICHQ INitiatives
Our Sickle Cell Disease Work
NICHQ has been committed to improving care for patients with SCD for more than 15 years. We’re grateful to have insight from a diverse team of experts on these project-related SCD initiatives.
SHine the Light
World Sickle Cell Day Campaign Resources
Shine the Light on Sickle Cell is dedicated to supporting sickle cell awareness, education, state-of-the-art treatment and research, and bringing hope to families affected by SCD. Use this helpful toolkit to #ShineTheLight on World Sickle Cell Day.
Shine the Light Campaign Toolkit
Download and share these resources as you prepare
Publications
Improving Health Care Transition for Young Patients With Sickle Cell Disease Through Quality Network
JAMA NETWORK OPEN
Transitioning from pediatric to adult health care is crucial for the continuity of care for young adults with sickle cell disease. Among 5 pediatric hematology practices participating in the Florida Pediatric Hematology Learning and Action Network, 3 practices lacked transition programs before this quality improvement project.
Summary
NICHQ’s Florida Children’s Medical Services Learning and Action Network team recently contributed to a study that was published in JAMA. This publication evaluated the implementation of QI programs in five pediatric hematology practices to improve care for youth living with sickle cell disease and aid in the transition from pediatric to adult health care. The study found that collaboration among centers, sharing responsibilities across clinicians, identifying patients in advance using electronic health records and clinic-staff huddles, and having electronic readiness assessments and dot phrases were indicative of successful and sustained outcomes.
NICHQ Insights
Reading List for World Sickle Cell Day
Check out our insights to learn how you can support improvements to SCD research and treatment.
NICHQ News
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