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.
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Resource for Improving Relationships Between Providers and People Living with Sickle Cell Disease
Too often, people living with Sickle Cell Disease (SCD) and their families and caregivers miss critical healthcare appointments for a variety of reasons. These important resources and tools can be used to guide efforts to improve relationships between providers and people living with SCD.
Mental Health Awareness Month Social Media Toolkit
Mental Health Awareness Month is celebrated to fight stigma, educate the public, and advocate for policies that support people with mental illness. We’ve put together an online collection of social media posts and graphics to outline the significant role mental health plays in overall health and wellness and promote better mental health for children, families, and caregivers.
Addressing Early Childhood Health Equity in Communities and States
Early Childhood Health Equity (ECHE) work seeks to strengthen early childhood systems to support healthy child development and reduce health inequities and disparities that can have a lifelong impact. These briefs synthesize the recent work of the ECHE Landscape Project and highlight the themes and findings that emerged across the project activities.
National Infant Immunization Week 2021 Infographics
Since the beginning of the COVID-19 pandemic, millions of children throughout the country have missed routine vaccinations. Vaccination is one of the best ways parents can protect infants, children, and teens from serious, highly contagious diseases, including measles, whooping cough and polio. During National Immunization Week, use these infographics to raise awareness about missed vaccinations and educate families on the importance of timely infant and child vaccinations.
Safe Infant Sleep and Breastfeeding Myths and Facts
Pediatricians, family physicians, and other health care providers can use these documents during conversations with families to address myths and facts about safe infant sleep and breastfeeding.
National Minority Health Month Social Media Toolkit
In recognition of National Minority Health Month, we’re sharing a social media toolkit and infographic to raise awareness about racial and ethnic disparities and the need to achieve health equity. Download these resources to use on your own social channels and make sure to tag @NICHQ so we can like and share your post.