Working to Improve Sickle Cell Healthcare (WISCH)
Two programs—the Sickle Cell Disease Newborn Screening Program (SCDNBSP) and the Sickle Cell Disease Treatment Demonstration Program (SCDTDP)—aimed at improving screening and follow-up for those who have tested positive for sickle cell disease and trait, and improving care across the lifespan.
SCDNBSP: June 2011 to May 2015. SCDTDP: September 2010 to September 2014.
- Who: The SCDNBSP involved six teams comprised of federally qualified community health centers and other primary care sites, comprehensive sickle cell treatment centers and community-based organizations. The SCDTDP consisted of nine teams comprised of community centers, doctors, sickle cell departments, emergency room coordinators, parents and patients.
- Funder: The project was funded by HRSA and in partnership with the Boston Medical Center and the Sickle Cell Disease Association of America.
- Our Role: Facilitated a Breakthrough Series learning collaborative to apply quality improvement methodology to sickle cell disease care and education in a variety of settings. Led the development of expert-reviewed quality measures for sickle cell disease (e.g. acute care measures). We also served as the National Coordinating Center for SCDTDP and the National Coordinating and Evaluation Center for SCDNBSP. In these roles, we collected, monitored and distributed best practice data and findings, identified protocols for the treatment of sickle cell disease and related complications, and identified and disseminated educational materials related to sickle cell disease.
Sickle Cell Disease Treatment Demonstration Program 2014 Congressional Report
This report to Congress synthesizes the results and recommendations of four years of the Sickle Cell Disease Treatment Demonstration Program (one part of NICHQ's Working to Improve Sickle Cell Healthcare project).
Sickle Cell Disease Treatment Demonstration Program 2014 Model Protocol
The purpose of this model protocol is to provide clinicians, nurses, allied health professionals, community-based organizations and public health agencies with recommendations and strategies to improve care provided to individuals with sickle cell disease and trait.
Sickle Cell Pain in the Emergency Department: A Guide to Improving Care
This implementation guide was developed for healthcare providers who care for individuals with sickle cell disease in hematology programs and acute care settings such as the emergency departments and day hospitals. It provides insights and lessons learned from multidisciplinary teams across the country that have succeeded in improving the management of pain episodes in emergency departments or day hospitals for both pediatric and adult patients.
How One Mom is Raising the Profile of Sickle Cell Disease
Tammy Smith's daughter, Precious, often got sick as a baby and she cried—a lot. "One time she was holding her arm and we thought it was broken, but it wasn’t. Another time she couldn't even sit up. She would just cry and cry. The doctors kept giving us medicine, but it didn't help," recalls Tammy.
Sickle Cell Pain Protocol Reduces Wait Times for Meds and Eases Patient Frustration
When kids with sickle cell disease come to an emergency room (ER) asking for painkillers, the care can sometimes be less than ideal. In a busy ER, there can be long wait times, and, especially with an illness like sickle cell disease that has no visual signs of pain, doctors sometimes question whether a patient is really in a medical crisis or just drug seeking.