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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Census Social Media Toolkit
We’ve put together a collection of social media posts and graphics to help you encourage families to participate in the census. Use these posts on your own social channels to connect with families and prevent children from being undercounted. Make sure to tag @NICHQ so we can like and share your post.
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.
Rare Disease Day Social Media Toolkit
Use this social media toolkit with infographics, images and sample posts sharing key statistics and facts that illustrate the impact rare diseases have on over 25 million Americans. Share the toolkit with your colleagues and use it yourself on Rare Disease Day on Feb. 29, 2020
Fast Facts to Champion Support for Caregiver Depression
This brief provides fact sheets on the key strategies and information influencers need to help more caregivers affected by depression access the supportive services and resources.
Interactive E-Handout for Safe Sleep Conversations
This interactive E-handout helps families learn about safe sleep practices. Health professionals can sit with families and click through the pages where they’ll find different sleep scenes and environments. A series of prompts and pop-ups show what is and is not safe and inspire learning conversations. Families can also access the handout at home and use it to teach their friends and families about safe sleep.
Opportunities for Medicaid to Transform Pediatric Care for Young Children to Promote Health, Development, and Health Equity
Covering one half of young children birth to five, Medicaid (and Medicaid-CHIP programs) plays a critical role in improving young children’s health and developmental outcomes and assisting the families who support their healthy development. This document provides a common framework and specific opportunities for states and their partners working to improve Medicaid for young children.