Using Public Health Surveillance to Improve Outcomes among People with Sickle Cell Disease

NC SCDC is a state-level Sickle Cell Disease (SCD) Surveillance Program that addresses the limited knowledge about the epidemiology of SCD in North Carolina and the United States. The program generates actionable data to improve health outcomes for historically marginalized people with SCD. NC SCDC partners with the Department of Health and Human Services, Division of Public Health (Co-PI Weeks), Piedmont Health Services and Sickle Cell Agency, and Atrium Health.

SCD is a complex, inherited blood disorder that leads to a 30-year shortened life expectancy, severe acute and chronic pain, organ damage, and stroke. The disease affects millions of people worldwide, and it is widespread among those whose ancestors were from Sub-Saharan Africa, some parts of South America, the Caribbean, Central America, and Mediterranean countries. An estimated 100,000 people, mainly African Americans, live with SCD in the U.S.

Limited access to specialized healthcare, discrimination surrounding appropriate pain management, as well as a lack of healthcare provider knowledge and awareness about the disease and its complications exacerbate the burden of the disease. Additionally, the economic implications of SCD further widen income disparities, creating barriers and limiting opportunities for people living with the disease.

The lack of a national surveillance registry remains a major limiting factor to addressing healthcare needs and health inequities for people with SCD in the U.S. The Centers for Disease Control and Prevention is funding state-level surveillance programs to address this gap. As of September 2023, NC SCDC is one of 16 programs funded nationally. The NC SCDC program aims to generate and disseminate surveillance findings informing clinical practice, research, and policy at the state and national levels. NC SCDC surveillance data have been used to inform statewide initiatives and quality improvement efforts at sickle cell centers, support grant applications, support conversations with a legislative assistant, and prepare manuscripts for publication.

For example, the NC SCDC program collaborated with the Medical Research Committee of the Governor's Appointed NC Council on Sickle Cell Disease and Related Disorders on an initiative to improve emergency department (E.D.) care for people with SCD in the state. The initiative includes the implementation of an E.D. pain management toolkit to improve the management of vaso-occlusive pain episodes. Additionally, a screening and referral tool is integrated to identify unmet social determinants of health needs for individuals with SCD, referring them to the state's sickle cell syndrome program. NC SCDC provided E.D. utilization tables ranked by the top 20 facilities with the highest number of E.D. visits between 2013 and 2019 to guide the team in prioritizing implementation efforts and support requests to institutional leadership using institution-specific data.

Kayle said another area that researchers now better understand is the birth prevalence of SCD in N.C.

She worked with DUSON's partners at the Division of Public Health and Piedmont Health Services and Sickle Cell Agency to create public education materials available in English and Spanish to increase awareness of births with SCD NC and provide information on resources available for these infants and their families. 
https://sites.duke.edu/ncscdc/resources

Continued research, community engagement, and strong collaboration among diverse stakeholders, including state and local health departments, community-based organizations, clinicians, and researchers, are critical to tackling the complex challenges of SCD. More importantly, bringing people living with SCD to the heart of Kayle and her team's efforts is vital. NC SCDC engages its community partners, including Piedmont Health Services and Sickle Cell Agency, people with SCD and their families, and the Governor's Appointed NC Council on Sickle Cell Disease and Related Disorders, not only by disseminating findings from our program but especially in what questions to ask of the data in the first place. "Our community partners participate on an advisory council for NC SCDC and are a major voice in determining the analysis priorities for our program," Kayle said.

The exact number of people living with SCD remains unknown. Whereas reliable and comprehensive data are essential for addressing the challenges of SCD. Policymakers and different organizations need data on the prevalence of SCD in specific communities, healthcare utilization patterns, the number of children born with SCD, where births occur, and the quality of care received by people with SCD. Healthcare professionals need data for planning and allocating resources to provide care for people living with SCD, identifying gaps in care, and developing tailored interventions to improve care. This data can also identify areas where care can be improved and develop policies that promote quality care. "This is where the NC SCDC can make a significant impact- implementing statewide surveillance and disseminate aggregate level findings regarding the epidemiology and healthcare utilization patternsof SCD in the state," Kayle said.

Kayle said her work gives her deep meaning as she collaborates with her team and partners to translate data into action that has the potential to influence and ultimately improve the lives of people living with SCD. "As a nurse, it has been a privilege to be at the bedside every day and have the opportunity to make a difference one patient at a time. Through this work, I am humbled and honored to have the opportunity to make a difference at the population level as we work to address some of the health inequities and social justice issues associated with sickle cell disease," Kayle said.

Social determinants of health drive 80% of health outcomes. "If we want to make a significant impact and improve the lives of historically marginalized populations, we need to focus beyond health care delivery and address the health inequities and social justice issues that impact people's lives and health," Kayle said. "That is why health equity lies at the heart of my work in the NC SCDC program. I am committed to addressing social determinants of health through highlighting how factors such as proximity to healthcare service, and transportation availability influence the health of individuals with SCD. This is because reliable data allows us to identify and address disparities in access to quality healthcare for individuals living with SCD. Through my research and teaching, I am committed to equip and inspire the next generation of nurses with the need to embrace evidence-based decision-making, and just and equitable care that upholds and respects the multiple needs of individuals living with SCD."

Kayle is a double DUSON alumna (MSN 2005 and PhD 2017). She rejoined DUSON as a faculty member in 2019 and is a native of Beirut, Lebanon.