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Sickle Cell Disease (SCD), often diagnosed in infancy, alters the trajectory of a patient’s life forever. The average lifespan of a sickle cell patient is roughly 20 to 30 years shorter than average due to the ongoing, constant complications that come with a SCD diagnosis. Here at the School of Nursing, we have one of the most robust programs of SCD research in the nation, with multiple nurse scientists approaching the care of patients with SCD from a variety of angles. One of these nurse scientists, , has spearheaded the creation of a statewide SCD surveillance program here in North Carolina, a vital piece of the puzzle when it comes to tracking, understanding, and treating sickle cell disease. Dr. Kayle explained what drew her to this research and why this particular program is so important.

“I was drawn to sickle cell disease (SCD) because it sits at the intersection of complex clinical management and deep inequities. People with SCD can experience recurrent severe pain, organ damage, and premature mortality, while also facing systemic barriers—limited access to specialized care, frequent emergency department (ED) reliance, transportation challenges, and stigma in health care settings. Those realities make SCD not only a clinical condition, but a major public health issue.

"The School of Nursing has been a strong home for SCD research and practice improvement. Faculty contribute locally, nationally, and globally— advances ED pain management (including decision-support tools and individualized pain plans), develops precision-health approaches to promote equitable pain care, and strengthens provider capacity and care models in the U.S. and in low-resource settings.

"My own work focuses on public health surveillance. In partnership with the North Carolina Department of Health and Human Services, Division of Public Health, I co-lead the North Carolina Sickle Cell Data Collection (NC SCDC) program, a statewide surveillance effort funded by the Centers for Disease Control and Prevention. We link data from multiple sources to understand the epidemiology of SCD in North Carolina, patterns of health care use, and outcomes over time—then translate findings into actionable insights for practice, policy, grantmaking, and community-based program planning.”

Looking at the NC SCDC effort, what do you see as its most critical goals for improving our understanding of sickle cell disease in North Carolina?

“Because there is no national SCD registry, we still don’t have a complete picture of how many people are living with SCD, where they live, or how their needs change across the lifespan. NC SCDC—along with 15 other state programs—helps fill that gap by linking multisource data to track epidemiology, health care utilization, and outcomes.

"In North Carolina, our most critical goals are to clarify the population’s needs across the lifespan and to pinpoint geographic and structural gaps in access to SCD-specific services. When we share results through publications, presentations, and brief reports, I want the data to inform clinical practice and resource allocation—especially in communities without specialty centers. For example, we have found that many people with SCD live in southeastern North Carolina, where there is no sickle cell center and where transportation disadvantage can further limit access to care.

"By providing population-level data, I aim to help state and local leaders make informed decisions about funding and programming. Our findings have supported a statewide emergency department pain-management toolkit initiative through the Governor’s Council on Sickle Cell Disease and Other Blood Disorders, and they have also informed proposed state legislation to expand funding for transportation, care coordination, and care delivery through sickle cell centers, community-based organizations, and the Division of Public Health. Ultimately, my goal is to make needs and barriers visible so North Carolina can target interventions that improve care and equity.”

Why is a comprehensive, state-level surveillance program so important for addressing the social and structural determinants of health that influence outcomes for people living with sickle cell disease?

“A comprehensive state-level program matters because SCD outcomes are shaped by structural determinants of health—specialist availability, transportation, underinsurance, and fragmented care. By linking multisource data statewide, I can identify where these barriers concentrate and help guide resources to address them.

"For example, in a multi-state analysis of newborn screening data (11 states), we found that about two-thirds of mothers of newborns with SCD lived in counties with high or very high social vulnerability, especially related to housing and transportation. Findings like that point to practical actions—early connection to care coordination and social work, transportation support, and options such as telehealth or outreach clinics. In North Carolina, sickle cell educator-counselors affiliated with the Division of Public Health and community partners help meet some of these needs.

"In another North Carolina analysis, we linked all-payer hospital discharge data with the CDC Social Vulnerability Index to define what “high ED use” looks like in SCD using longitudinal patterns (rather than an arbitrary cutoff). We identified four groups: low (0–1), moderate (2–9), high (10–32), and super-high (≥33) ED visits per year. While fewer than 10% of people were in the high or super-high groups, they accounted for more than half of all ED visits. Those patients were older, more socially vulnerable, more likely to visit multiple EDs, and more likely to die—and to die younger (median ~32–33 years versus ~50 in the moderate group). Those insights are only possible when we can link people and encounters and follow outcomes over time.”

Based on your work with the SCDC program, how do you envision NC SCDC data being used by clinicians, policymakers, or community partners to meaningfully impact patient care and equity across the state?

“I envision NC SCDC data driving action through our formal data request process, which allows clinicians, researchers, public health officials, and community-based organizations to request aggregate data. Each request is reviewed by our data team and the Division of Public Health. To date, our data has supported grant applications, scientific publications, quality improvement initiatives, community program planning, and policy discussions. When shared with partners, these data can highlight gaps in care, guide targeted resource allocation, and shape programs that address structural inequities—so surveillance findings translate into meaningful improvements in care and equity for North Carolinians with SCD.”

The views presented in this article are those of Dr. Kayle and do not necessarily represent the views of the North Carolina Department of Health and Human Services, Division of Public Health.