Nurses who care for patients with sickle cell disease (SCD) can have a major impact on improving health outcomes and quality of life for their patients. But this is not possible without the knowledge and clinical skills necessary to provide specialized comprehensive care. That is why the University of Tennessee Health Science Center’s College of Nursing is at the forefront of an effort to establish a Sickle Cell Boot Camp to Promote Nursing Excellence.
“Patients with SCD can rapidly develop life-threatening complications, some of which are unique to SCD. If nurses do not have the specialized knowledge and assessment skills to detect these symptoms early, the patient’s condition often escalates and can result in death,” said Sara Day, PhD, RN, FAAN, who is assistant dean and director of the Center for Community and Global Partnerships in the UTHSC College of Nursing.
Thanks to a $50,000 grant from Global Blood Therapeutics (GBT) Inc., a biopharmaceutical company that develops and delivers treatments for SCD, the pilot boot camp will be held June 13-16 at UTHSC. Grant investigators are Dr. Day, Assistant Professor Artangela Henry, DNP, APRN, AGACNP-BC, FNP-C, and Yvonne Carroll, JD, RN, director of patient services in the department of hematology at St. Jude Children’s Research Hospital. Boot camp participants include nurses from Memphis hospitals, as well as from around the country, including nurses from Massachusetts, Ohio, North and South Carolina, Minnesota, California, Wisconsin, and Pennsylvania.
The SCD Nursing Boot Camp is the first national intensive nursing program of its kind, with about 40 hours of educational content. The program allows nurses to gain theoretical and clinical expertise in the care of patients with SCD. The boot camp includes a patient panel, classroom presentations, and simulation experiences in the UTHSC Center for Healthcare Improvement and Patient Simulation. The SCD Nursing Boot Camp curriculum was developed in partnership with St. Jude Children’s Research Hospital and the International Association of Sickle Cell Nurses and Professional Associates (IASCNAPA).
SCD is an inherited blood disorder that affects about 100,000 people in the U.S. Complications of the disease are caused by the sickle-shaped cells that can get stuck when traveling through small blood vessels and block blood flow throughout the body. Complications include pain crises, acute chest syndrome, organ damage, blood clots, and anemia.
Despite recent medical progress in treating SCD, the life expectancy of people with the disease remains lower than the average life expectancy. A JAMA Network Open study, published Nov. 15, 2019, found that the life expectancy for the study cohort with SCD was 54 years, compared to a life expectancy of 76 years for the group without the disease.
Dr. Day said she hopes to offer the SCD Nursing Boot Camp twice a year, once the pilot program is completed. The group will be seeking additional funding to continue the program beyond the pilot.
Giving front-line caregivers comprehensive information could have a direct effect on improving outcomes, Carroll said. “Many preventable incidents occur every year because nursing staff do not have the specialized knowledge needed to care for patients with SCD. Nurses are front-line workers and see changes in hospitalized SCD patients before anyone else. SCD is unique because it affects every part of the body, and the symptoms can change rapidly and without warning. The SCD boot camp will provide nurses with the knowledge and skills to recognize high-risk situations in patients with SCD, and what to do in response to them.”
Dr. Henry said there is a definite need for more comprehensive education for nurses. “Sickle cell disease has been in existence for over 110 years as we know it. During that time frame, there has been limited information in textbooks to explain its pathophysiology and the complications of those affected by the disease. Also, there has not been much literature on how to care for these individuals from a nursing perspective. Moreover, there have been only four FDA-approved drugs during that time frame that aid in modifying the disease process. Health care providers should be equipped with knowledge to care for these patients and have the skill set to detect when complications are worsening. This boot camp will provide both evidence-based knowledge and skills to nurses caring for those with sickle cell disease.”