With more than 90,000 people affected by sickle cell disease (SCD) in the United States, it’s important to have health care services that will improve both patient reported outcomes and access of care. Paula Tanabe, PhD, MSN, MPH, RN, FAEN, FAAN, associate professor for Duke University School of Nursing (DUSON) and Duke University School of Medicine, and Nirmish Ramesh Shah, MD, assistant professor for Duke University School of Medicine, are co-principle investigators on a $4.6 million grant entitled “Improving SCD Care Using Web-Based Guidelines, Nurse Care Managers and Peer Mentors in Primary Care and Emergency Departments in Central NC.” The grant is funded by the National Institute of Heart, Lung and Blood and the National Institutes of Health and will be for a six-year period.

“Our grant was selected as one of eight centers across the United States to participate in a sickle cell consortium to optimize care of adolescents and adults with sickle cell disease,” said Tanabe. “The overall goal of the proposed project is to implement and evaluate a co-management model of care for persons with sickle cell disease in central North Carolina.”

Tanabe and Shah have found in their research that many patients with sickle cell disease receive care primarily from specialty physicians and emergency departments (ED), thus resulting in a lack of primary care, a high number of ED visits and hospitalizations, and ultimately poor health outcomes.

The multi-phase grant includes a comprehensive community needs assessment to identify barriers to receiving disease co-management among SCD specialists, primary care providers and emergency departments; enrollment of 300 patients in a national SCD registry; and an intervention project. It will also compare differences in emergency department and hospital use, hydoxyurea (the only approved medication for SCD) use and patient reported outcomes between a group of patients who receive nurse care management alone or nurse care management and a peer mentor.

“The consortium-style project is a partnership with Duke Health, emergency departments and Community Care North Carolina (CCNC),” Shah said. “And the aim of the consortium is to establish a registry based out of multiple sites in which patients with SCD can contribute data over the period of the project and beyond. This will advance our research by contributing to improvements in outcomes for patients living with SCD.”

Through the partnership with CCNC, the consortium will have access to primary care providers, network care managers and quality improvement specialists representing approximately 31 counties or approximately 50 percent of North Carolina.

Others involved in the project include co-investigators Caroline E. Freiermuth, MD, emergency medicine specialist with Duke Health; Hayden B. Bosworth, PhD, professor with Duke University School of Medicine; Susan G. Silva, PhD, associate professor with DUSON; George L. Jackson, PhD, associate professor with Duke University School of Medicine; Rachel L. Richesson, MS, PhD, MPH, FACMI, associate professor with DUSON; Janet Prvu-Bettger, ScD, FAHA, associate professor with Duke University School of Medicine; Frederick “Fred” Johnson, MBA, assistant professor with Duke Community and Family Medicine; and Marian Earls, MD, MTS, FAAP, director of Pediatric Programs with CCNC.

“By improving outpatient care and forming true partnerships between SCD specialists, primary care and ED providers, we hope to address the Institute for Healthcare Improvement Triple Aim initiative of improving quality care and patient satisfaction while decreasing cost and improving population health.”