Sickle Cell Disease a Major Focus of Professor’s Work

People diagnosed with Sickle Cell Disease (SCD) typically experience intensifying pain, functional disability and have a shortened lifespan. Along with the stigma they face, they can also struggle with poor pain management and poor quality of life.

Nancy Crego, PhD, RN, CHSE, has dedicated her career to helping people with the disease. An assistant professor at the Duke University School of Nursing, she focuses on easing Sickle Cell pain and understanding health system factors that perpetuate health inequities in people struggling with the disease. Much of her early work focused on pediatric procedural sedation.

“These areas may seem unrelated, but they actually are very much aligned,” Crego said. “SCD is an inherited disease predominantly affecting African American people. They experience severe pain, that begins in childhood, life threatening complications and health inequities throughout their lives.”

Children sedated for diagnostic procedures often have conditions that require that they have painful procedures repeatedly, for example cancer, injuries, such as burns or chronic health conditions such as SCD.

“There are many myths about childhood pain and fears about providing adequate sedation and pain management, so children often receive less than optimal pain management and have traumatic experiences that affect them later in life because of this,” Crego said. “Children and people with SCD are often excluded in research, so there are many gaps in evidence needed to improve their care.”

After earning her master’s degree and working in pediatric acute care nursing for 20 years, Crego wanted to learn more about the health care system and data used in providing care. She decided to quit her nurse management job and go back to school to pursue a Ph.D. in nursing at the University of Virginia. She came to DUSON in 2014 with a mission to make life better for people with SCD, especially children and their families.

“Health inequities cannot be eliminated through individual efforts. It takes systems to change them,” she said. “I try to influence the next generation of nurses to think in these system-level terms, in addition to thinking about that one individual person or family that they are working with that day. I try to make them feel more comfortable with the use of data and to think about how these inform our health care system.”