Fostering Better Outcomes for Treating Sickle Cell Disease
Approximately 100,000 Americans live with sickle cell disease (SCD). Those with the inherited blood disorder face a lifelong battle with pain, infection and other serious health problems that can affect every organ in the body. Previously considered a pediatric condition, medical advancements and improvements in care mean children with SCD are now living into adulthood. However, due to an insufficient number of specialized medical centers and trained providers, many with SCD struggle to receive quality healthcare across their lifespan.
NICHQ’s efforts as the National Coordinating Center (NCC) marked the first time in U.S. history that improvements in SCD care were tackled on a large, regional and national scale. This effort launched an innovative approach where each Regional Coordinating Center (RCC)–Heartland, Midwest, Northeast and Pacific—developed regional networks of care and implemented unique strategies to increase provider knowledge around SCD. NICHQ led network-wide measurement activities and coordinated the sharing of best practices for all improvement work. Alongside collecting national data, NICHQ developed common measures for RCCs to compare data captured in state “registries,” ensuring that results could be measured collectively and comparatively.
As a result of the initiatives:
- Four new SCD regional clinics opened in high need areas
- All four regions increasing hydroxyurea use—a treatment therapy—among patients with SCD
- Over 200 providers engaging in telehealth and telementoring sessions
- Nearly 7,000 patients with SCD contributed information to electronic health registries
- Nearly 11,000 patients with SCD received care through SCDTDP regional networks, reflecting a nearly 30 percent increase in those receiving care
- Developed a Compendium of Tools and Materials with promising practices and strategies for improving sickle cell disease support. Find out more.
- Created a model protocol of high-leverage changes that lead to process improvements, for clinicians, nurses, allied health professionals, community-based organizations and public health agencies. Find out more.
Read the full 2017 Congressional Report here.
Results Webinar: Strategies and Next Steps for Improving Sickle Cell Disease
Find out lessons learned and recommendations stemming from this national program focused on improving the quality and access to care for patients with sickle cell disease. Grantees shared their on-the-ground efforts to create systems change and make a difference in the lives of children and adults with sickle cell disease.
Click here for a free webinar recording.
The effort’s success is defined not only by its initial results, but by the enduring impact it will have on the SCD community through the systems it put in place. Thousands more patients with SCD are already receiving quality care and hundreds of providers now have the confidence and skills to provide quality treatment. The resources, clinics, learning centers and networks now available ensure sustained improvement. As the number of knowledgeable providers continues to grow and barriers to care are removed, the amount of SCD patients benefiting from quality, coordinated care will continue to multiply.
Looking for a change agent to enhance your initiative?
Contact us to get started!
National Minority Health Month Social Media Graphics
We've put together a small collection of social media graphics to help raise awareness about some of the health concerns facing minority families. Download them to use on your own social channels and make sure to tag @NICHQ so we can like and share your post.
Maternal Depression: First Steps
This issue brief will help mothers, families and family advocates understand the signs of maternal depression, the interdependence between caregiver-child health and well-being, and provides guidance on how mothers can connect with their pediatricians to get the help they need to heal.
Data-for-Equity Research Brief
Child care is unaffordable for the majority of working parents, especially for low-income and black and Hispanic working parents. This research brief provides insight and analysis about the challenges families face in affording childcare, which can underpin inequities in early childhood health and development.
Early Childhood Data in Action
Three case studies from communities leveraging data to improve early childhood outcomes. Specifically, readers will uncover how to develop a culture of data collection, build local capacity, and use data to inform critical public policy decisions.
Early Childhood Comprehensive Systems CoIIN Learning Session Resources
Resources from the Early Childhood Comprehensive Systems CoIIN summer conference. Click in for on-site videos of two powerful panel presentations and a compilation of popular tools and resources.
Lessons in Demonstrating Return on Investment of Statewide Perinatal Health Improvement Initiatives
This issue brief highlights Oklahoma and Tennessee's experiences assessing the economic impact of statewide perinatal health improvement initiatives. Their findings can help other states prove the return on investment of public health initiatives and make the case for future efforts.