Improving Treatment and Care Processes for Patients with Sickle Cell Disease
“Helping providers and emergency departments understand the unique clinical needs of patients with sickle cell disease is my passion. The insights gained from this AHRQ-supported work will not only improve patients’ quality of life, but it will improve the quality and efficiency of their care.”
Patients with sickle cell disease (SCD), an inherited red blood cell disorder, often have intense pain that brings them to hospital emergency departments (EDs) for immediate treatment. Their care can be fragmented, with frequent hospitalizations and specialist care, little follow-up with primary care doctors, and repeat ED visits.
Until recently, providers did not have evidence-based guidelines to help them effectively manage SCD patients’ care. Today, some of these challenges to improving patient outcomes and care processes are being overcome, thanks to the work of AHRQ-funded researcher, Paula Tanabe, Ph.D., R.N.
A professor in the schools of nursing and medicine at Duke University, Durham, N.C., Dr. Tanabe brings more than 30 years of experience as an ED nurse to inform her research activities. During that time, she saw how pain management improved for patients with a wide array of conditions, but not for patients with SCD. These patients, who are primarily African-American, face intense pain when a sickle cell crisis occurs. The condition is also associated with complications and shorter lifespans.
To identify potential risks in ED management processes for SCD patients, Dr. Tanabe used AHRQ funding to assess portions of the Emergency Department Sickle Cell Assessment of Needs and Strengths (ED-SCANS), a decision support tool she previously developed to improve care processes. The 2011-2015 project helped to redesign workflow, operational systems, and processes around triage, pain management, and identifying and referring high-risk SCD patients at two emergency departments. Quality improvement teams conducted and evaluated the assessments and their outcomes.
These findings laid the foundation for Dr. Tanabe’s current AHRQ-funded research project, which uses evidence-based decision support tools to improve co-management (primary care and SCD specialty care) for patients usually treated by specialty physicians and in EDs. Primary care providers may be more likely to co-manage patients with SCD if they have evidence-based tools to support their clinical decisions. The tools, which include clinical guidelines and best practices, are based on a 2014 expert panel report on evidence-based management of SCD from the National Heart, Lung, and Blood Institute. In this study, Dr. Tanabe and her colleagues are disseminating the evidence-based recommendations in various forms (apps, paper, and via the web) to primary care and ED providers throughout North Carolina. The team is examining how physicians use the decision support tools and what patients think of the co-management model.
The project also lays the groundwork for more widespread use of SCD decision support tools. In addition to testing the tools, Dr. Tanabe and her team are looking at outcomes related to their use. For example, they are tracking prescriptions filled for hydroxyurea, a drug used to prevent pain episodes; the need for blood transfusions; and the number of ED visits and hospitalizations. This work will conclude in 2020 and is expected to boost the role of primary care physicians in the ongoing care of SCD patients and potentially reduce costly ED visits and hospitalizations.
Dr. Tanabe’s expertise in ED management and care also informed her work as a co-author of AHRQ’s Emergency Severity Index (ESI) Version 4, an algorithm that helps EDs quickly triage patients into five levels based on their acute-care and resource needs. The ESI tool was updated in 2005 and 2012 and is used by hospitals nationwide and globally.
In addition to her research activities, Dr. Tanabe is a widely published author on the care and management of SCD patients, pain management, and ED triage. She is a fellow of the American Academy of Nursing and the Academy of Emergency Nursing.
Principal Investigator: Paula Tanabe, Ph.D., R.N., Professor of Nursing, Associate Dean for Research Development and Data Science
Institution: Duke University School of Nursing
Grantee Since: 2005
Type of Grant: Various
Consistent with its mission, AHRQ provides a broad range of extramural research grants and contracts, research training, conference grants, and intramural research activities. AHRQ is committed to fostering the next generation of health services researchers who can focus on some of the most important challenges facing our Nation's health care system.
To learn more about AHRQ's Research Education and Training Programs, please visit http://www.ahrq.gov/training.