Trusted Resources: Evidence & Education
Scientific literature and patient education texts
Sickle treatment and outcomes research in the midwest (storm) – a regional network for improving the management of sickle cell disease
source: American Society of Pediatric Hematology/Oncology
year: 2017
authors: Lisa M. Shook, Christina B. Farrell, Sandra Fuller, Karen A. Kalinyak, Stephen C. Nelson, Brandon M. Hardesty, Kay L. Saving, Wanda J. Whitten-Shurney, Julie A. Panepinto, Lori E. Crosby
summary/abstract:Background:
Sickle cell disease (SCD), which affects the red blood cell, is the most common genetic disorder in the United States. There are approximately 100,000 patients with SCD in the United States and approximately 15,000 in the Midwest. Sickle Cell Treatment and Outcomes Research in the Midwest (STORM) is a six-state regional learning network funded by Health Resources and Services Administration (HRSA) to improve outcomes for individuals with SCD in Indiana, Illinois, Ohio, Michigan, Minnesota and Wisconsin. Led by the Cincinnati Comprehensive Sickle Cell Center in collaboration with the James M. Anderson Center for Health Systems Excellence, STORM brings together pediatric and adult providers to collaborate with patients and families to 1) address the lack of providers knowledgeable evidence-based management of SCD and 2) improve under-utilization of hydroxyurea by using provider education strategies and quality improvement methods.
Objectives:
STORM’s global aim is to build a sustainable network to improve outcomes and care for patients with SCD in the Midwest. Our current smart aim is to improve health for patients with SCD, as measured by a 20% increase in the eligible number of patients prescribed hydroxyurea, based on recommendations in the NHLBI Evidence-Based Management of SCD guidelines.
Results:
Sites received training in QI methods and are now conducting site-specific QI projects to address local needs. Regional data collection efforts are ongoing; currently, there have been over 300 patients and 1700 patient encountered entered into REDCap. Preliminary results show that the number of eligible patients prescribed hydroxyurea has increased 20% over time, and 100% of eligible patients have been offered hydroxyurea in the STORM network.
Conclusion:
Preliminary data suggests that improvements will continue as sites become more experienced in QI methods. More regional patient-level data will also become useful in guiding future regional quality improvement efforts.
Related Content
-
Nociceptors Protect Sickle Cell Disease Mice From Vaso-Occlusive Episodes and Chronic Organ DamageSickle cell disease (SCD) is a common he...
-
Johns Hopkins Berman Institute of BioethicsEstablished in 1995, the Berman Institut...
-
Today’s Faces of Sickle Cell Disease: John Tisdale, MDFor many years, John Tisdale has been wo...
-
Genice Nelson, DNP, APRN, ANP-BCDr. Genice Nelson is a Nurse Practitione...
-
Today’s Faces of Sickle Cell Disease: Courtney Fitzhugh, M.D.Courtney Fitzhugh first became intereste...
-
Public Meeting on Patient-Focused Drug Development for Chronic PainMeeting Information: On July 9, 2018, F...
-
Caregiver Burnout: PreventionHere Are Some Steps You Can Take to Help...
To improve your experience on this site, we use cookies. This includes cookies essential for the basic functioning of our website, cookies for analytics purposes, and cookies enabling us to personalize site content. By clicking on 'Accept' or any content on this site, you agree that cookies can be placed. You may adjust your browser's cookie settings to suit your preferences. More Information
The cookie settings on this website are set to "allow cookies" to give you the best browsing experience possible. If you continue to use this website without changing your cookie settings or you click "Accept" below then you are consenting to this.