Teams Make Giant Leaps in Improving Care for People with Sickle Cell Disease

November 18, 2014

Sickle Cell Disease Model

For the past four years, NICHQ and its partners focused on improving care and outcomes for individuals affected by sickle cell disease through the Sickle Cell Disease Treatment Demonstration Program (SCDTDP).  As a result, people with sickle cell disease being treated at sites with SCDTDP grantee teams are experiencing more timely and compassionate care in emergency departments, increased access to providers and more reliable provision of recommended screenings and therapies.

Recently, NICHQ presented its recommendations and findings of the SCDTDP in a report to Congress, illustrating what the SCDTDP teams were able to accomplish.

  • Demonstrated significant improvements in care and outcomes for children and adolescents in healthcare clinics across the country
  • Verified the benefits to using intranasal fentanyl in the emergency room for sickle cell disease pain
  • Created a comprehensive recommended curriculum to be used with adolescents during the transition to adult care
  • Improved hospitals’ emergency room procedures to significantly reduce wait time for pain medications
  • Compiled and improved follow-up and educational materials to make information more useful and culturally relevant

The accomplishments of the grantee teams demonstrate the impact that can be realized when patients and families, providers, community-based organizations and public health and government agencies work collaboratively to improve care for individuals with sickle cell disease.

Learn more about the SCDTDP project and the Congressional Report on our website, or join NICHQ for an upcoming webinar for a discussion of the SCDTDP report findings and recommendations.