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Patient Outreach: UNC Research Finds Gap in Sickle Cell Education

A blood smear of sickle cells that block the body's absorption of oxygen in the bloodstream. (VivCaruna/Flickr)
A blood smear of sickle cells that block the body's absorption of oxygen in the bloodstream. (VivCaruna/Flickr)
May 17, 2016

CHAPEL HILL, N.C. - At least 5,000 people in North Carolina live with sickle cell disease, according to the Centers for Disease Control and Prevention (CDC).

But new research from the University of North Carolina-Chapel Hill indicates not all those patients have access to educational materials that can help them truly understand their condition.

Researcher Elizabeth McClure, doctoral student in Department of Epidemiology, explains why the disconnect is so important to recognize.

"If somebody is not able to read education materials and understand what to do, they may not know what their risk of passing down the disease to their kids might be," she says. "They might not know when they should see a doctor and all the things that might effect day-to-day life, living with sickle cell disease."

Sickle cell disease is a group of inherited conditions that affects hemoglobin, the protein that allows red blood cells to carry oxygen to all parts of the body.

McClure found when she and fellow researchers reviewed free patient-education materials, many of the documents required levels of reading and math skills just too high to be helpful to most Americans.

The CDC suggests patient-education materials should be understandable to at least 90 percent of people who read them, but the researchers scored the sickle cell information at a literacy index of between 44 and 76 percent.

McClure says she's seen oral health and sleep-care materials with the same pitfalls.

"There just should be more information available," she says. "And when we do develop more information, we need to be making sure that it's both culturally appropriate and at an appropriate reading level."

Nationwide, sickle cell disease impacts about 100,000 Americans and occurs among one in every 365 African American or black births.

In North Carolina, Mecklenburg, Guilford, Durham, Wake and Cumberland counties have the largest concentrations of newborns with the disease.

Stephanie Carson, Public News Service - NC