Care Providers
STORM is a multicenter collaborative network working to efficiently improve how our state partners deliver care to patients with sickle cell disease. We strive to give providers access to current and accurate resources that they can use to educate both themselves, their patients, and their patients' families. Our overarching goal is to improve the quality of life and health outcomes for all Midwesterners with SCD. We will accomplish our goal and aims via the following activities:
- Develop a network of providers who give care consistent with evidence-based guidelines.
- Expand our innovative monthly telementoring program – STORM TeleECHO – to improve access to provider education using an evidence-based curriculum.
- Increase the number of patients in the region with annual, documented transcranial Doppler ultrasounds, pneumococcal vaccinations, and receiving highly-effective disease-modifying therapies, such as hydroxyurea (HU).
- Engage patients, families, and stakeholders to improve care across the region.
- Expand the educational scope of a novel online clinical decision support tool website for providers to include hydroxyurea, immunizations, TCD screening, and transition.
- Create a shared measurement system and data repository that includes data on the regional SCD population and measures related to access, quality and outcomes.
- Expand upon a clinical decision support website for healthcare providers to include resources and educational materials for both patients and providers.
- Utilize a Hydroxyurea Shared Decision-Making Toolkit to facilitate patient-provider communication and increase hydroxyurea uptake.
Resources
- Hydroxyurea clinical decision support tools: Brochures for initial and recurring clinic visits new
- National Heart, Lung, and Blood Institute (NHLBI) Evidence-Based Management of Sickle Cell Disease: Expert Panel Report, 2014 – Full Report and Quick Guide
- National Institute for Children’s Health Quality (NICHQ) Sickle Cell Treatment Demonstration Project Congressional Report, 2014
- National Institute for Children’s Health Quality (NICHQ), 2015 Acute Care Guide
- Sickle Cell Disease Treatment Demonstration Program, 2017 Congressional Report new
- Sickle Cell Disease Treatment Demonstration Program, 2017 Model Protocol new
- Sickle Cell Disease Treatment Demonstration Program, 2017 Compendium of Tools and Materialsnew
References
Crosby LE, Joffe NE, Davis B, Quinn CT, Shook LM, Morgan D, Simmons K, and Kalinyak KA. (2016) Implementation of a Transcranial Doppler Ultrasonography Protocol for Young Children with Sickle Cell Anemia: From Research to Practice, American Journal of Preventive Medicine,51(1),S10-S16.
Crosby, L. E., Shook, L. M., Ware, R. E. and Brinkman, W. B. (2015), Shared decision making for hydroxyurea treatment initiation in children with sickle cell anemia. Pediatric Blood & Cancer, 62: 184–185. doi: 10.1002/pbc.25124
Crosby LE, Simmons K, Kaiser P, et al.(2014) Using Quality Improvement Methods to Implement an Electronic Medical Record (EMR) Supported Individualized Home Pain Management Plan for Children with Sickle Cell Disease. Journal of Clinical Outcomes Management, 21(5):210-217.
Nelson, S. C., Prasad, S. and Hackman, H. W. (2015), Training providers on issues of race and racism improve health care equity. Pediatric Blood & Cancer, 62: 915–917. doi: 10.1002/pbc.25448
Shook LM, Farrell CB, Kalinyak KA, Nelson SC, Hardesty B, Saving K, Whitten-Shurney W, Panepinto J, Crosby LE, and Ware RE.(2016) Using Telementoring to Improve Sickle Cell Disease Care in the Midwest, Medical Education Online, Nov 24;21:33616. 27887664