For decades, sickle cell disease (SCD) was considered a pediatric condition, with few individuals surviving past early adulthood. But thanks to medical advancements, life expectancy has significantly improved, and many adults with SCD are now living well into middle and older age. However, this longer lifespan has introduced new challenges, particularly in managing the effects of aging and preventing functional decline.
Charity Oyedeji, MD, assistant professor in the Division of Hematology and senior fellow at the Duke Aging Center, is leading innovative research that aims to transform how clinicians care for aging adults with SCD. Her work focuses on understanding the intersection between SCD and aging, identifying early signs of functional impairment, and developing targeted interventions to improve quality of life.
Assessing and Refining Functional Health in Adults with Sickle Cell Disease
Despite the increasing number of older adults with SCD, there remains a significant gap in care: there are no standardized tools to assess functional decline in this population. “A typical clinic visit for adults with sickle cell disease focuses on pain and SCD complications but rarely emphasizes function,” Dr. Oyedeji explains. “Yet, functional impairment is a major determinant of quality of life. Without proper assessment, we miss opportunities to intervene early and prevent further decline.”
To address this need, Dr. Oyedeji and her team developed the Sickle Cell Disease Functional Assessment (SCD-FA), a multidimensional tool designed to measure key aspects of physical and cognitive function, social support, and overall health. It builds upon comprehensive geriatric assessments traditionally used in oncology but is tailored to the unique needs of adults with SCD. While the six-minute walk test is currently the only functional measure routinely used in SCD care, it does not capture critical aspects of aging-related decline, such as balance, strength, or cognitive impairments. The SCD-FA fills this gap by incorporating a broader range of assessments, including gait speed, grip strength, chair stands, cognitive testing, and patient-reported measures.
In a pilot study at Duke, 40 adults with SCD—20 younger adults (ages 18-49) and 20 older adults (ages 50 and above)—completed the assessment. The study confirmed that the SCD-FA is feasible, acceptable, and safe, with 91% of participants completing the full evaluation and nearly all reporting that the assessment length was appropriate. Critically, the findings revealed that many individuals with SCD experience accelerated aging, exhibiting functional impairments typically associated with people 20–30 years older in the general population.
Dr. Oyedeji is expanding on these findings with The SILVR Study (SIckLe Cell Disease Functional Assessment Validation and Refinement Study), a large-scale effort to validate and refine the SCD-FA. The SILVR Study is focused on evaluating the tool’s reliability and accuracy in assessing functional impairment in older adults with SCD (age 40 and older). This study will be crucial in determining how well the SCD-FA predicts patient outcomes and whether it can serve as a standardized clinical tool for monitoring function over time.
From Personal Experience to Professional Impact
Dr. Oyedeji’s passion for improving SCD care is deeply personal. Several of her family members have died from complications of SCD, while others are thriving despite living with the condition. “Born out of my sorrow and sadness was the inspiration to improve the lives of people with SCD,” she says. “That motivation has guided my career development to this day.”
Her journey began with community advocacy during college and medical school, where she worked closely with SCD support groups to raise awareness and improve patient care. During her residency, she witnessed firsthand the challenges that adults with SCD face—particularly the lack of focus on aging-related concerns—and decided to pursue a career as a physician-scientist.
Dr. Oyedeji became the first fellow selected for Duke’s hematology-focused fellowship program, where she launched research into aging and frailty in SCD. She received several awards to support her work, including an NIH Pepper Older Americans Independence Center (OAIC) pilot grant, which provided early funding for the SCD-FA feasibility study. She also secured research support from the American Society of Hematology (ASH) Training Awards, Duke’s REsearch to AdvanCe Healthcare (REACH) Equity Career Development award, and the NIA GEMSSTAR Award, allowing her to deepen her expertise in geriatrics and health disparities research.
The Future of SCD and Aging Research
As Dr. Oyedeji continues her work with The SILVR Study, her next steps include optimizing the SCD-FA for clinical settings and expanding its validation in a larger sample of older adults with SCD. By refining the assessment, she aims to ensure that it accurately predicts patient outcomes and helps guide clinical decision-making.
She envisions a future where SCD care incorporates evidence-based strategies to preserve function and independence, ensuring patients live longer and enjoy a higher quality of life.
“SCD care is evolving,” she says. “As we continue to improve survival, we must also focus on ensuring that people with SCD age well. That means shifting from reactive care—treating pain crises and acute complications—to proactive care that identifies functional decline early and helps patients maintain mobility, strength, and independence.”