Working to Improve Sickle Cell Healthcare (WISCH)

Status: Active

WHAT: Two programs— the Sickle Cell Disease Newborn Screening Program and the Sickle Cell Disease Treatment Demonstration Program—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 for individuals with sickle cell disease.

WHO: The Sickle Cell Disease Newborn Screening Program involves six teams comprised of federally qualified community health centers and other primary care sites, comprehensive sickle cell treatment centers and community-based organizations. The Sickle Cell Disease Treatment Demonstration Program consists of nine teams comprised of community centers, doctors, sickle cell departments, emergency room coordinators, parents and patients.

WHEN: Sickle Cell Disease Newborn Screening Program: June 2011 to May 2015. Sickle Cell Disease Treatment Demonstration Program: September 2010 to September 2014.

FUNDER: The project is funded by HRSA and is in partnership with the Boston Medical Center and the Sickle Cell Disease Association of America.

NICHQ'S ROLE: Facilitate a Breakthrough Series learning collaborative to apply quality improvement methodology to sickle cell disease care and education in a variety of settings. Lead the development of expert-reviewed quality measures for sickle cell disease. NICHQ also serves as the National Coordinating Center for Sickle Cell Disease Treatment Demonstration Program and the National Coordinating and Evaluation Center for Sickle Cell Disease Newborn Screening Program. In these roles, NICHQ collects, monitors and distributes best practice data and findings, identifies protocols for the treatment of sickle cell disease and related complications, and identifies and disseminates educational materials related to sickle cell disease.

PROJECT VIDEOS

Title: Sickle Cell Disease and Primary Care
Produced By: iHOMES for SCD Network
[Source]

Title: Moving On Up to Adult Hematology
Produced By: St. Louis Children's Hospital
[Source]

Title: CRISIS - Experiences of People with Sickle Cell Disease Seeking Health Care for Pain
Produced By:Johns Hopkins Medicine
[Source]

Title: Sickle Cell Trait Awareness
Produced By:St. Jude Children's Research Hospital
[Source]

Screening and Education Resources

Though carriers of the sickle cell trait do not have the same symptoms as those with sickle cell disease, it is important for individuals to know their status and how it can impact them and their families. View our collection of resources that can be used by providers to education patients about sickle cell disease, sickle cell trait and screening.

View Resources

 

PROJECT PUBLICATIONS

Oyeku, Faro, and Homer. Improving Care of Patients with Sickle Cell Disease and Sickle Cell Trait: The Hemoglobinopathy Learning Collaborative Series. Journal of Clinical Outcomes Management. Vol. 21 (2) February 2014. [Source]

Kavanagh, Sobota, McClure, Sprinz, and Adams. Using an Electronic Health Record-Based Registry to Improve Pediatric Sickle Cell Care. Journal of Clinical Outcomes Management. Vol. 21 (4) April 2014. [Source]

Crosby, Simmons, Kaiser, Davis, Boyd, Eichhorn, Mahaney, Joffe, Morgan, Schibler, Anderson, Quinn, and Kalinyak. Using Quality Improvement Methods to Implement an Individualized Home Pain Management Plan for Children with Sickle Cell Disease. Journal of Clinical Outcomes Management. Vol. 21 (5) May 2014. [Source]

Porter, Carroll, Anderson, Lavoie Jr., Hamilton, Johnson, and Hankins. Transition Readiness Assessment for Sickle Cell Patients: A Quality Improvement Project. Journal of Clinical Outcomes Management. Vol. 21 (6) June 2014. [Source]

Oyeku, Wang, Scoville, Vanderkruik, Clermont, McPherson, Adams, and Homer. Hemoglobinopathy Learning Collaborative: Using Quality Improvement (QI) to Achieve Equity in Health Care Quality, Coordination, and Outcomes for Sickle Cell Disease. Journal of Health Care for the Poor and Underserved. Volume 23 (2012): 34–48. [Source]