Press Release

CDC Releases Study on Children With Sickle Cell Disease

Children with Sickle Cell Disease More Likely to Have Physical and Developmental Health Problems

The first national estimate on the health status of children with sickle cell disease revealed that black children with sickle cell disease are more likely to have intellectual disabilities, hearing deficits, and frequent severe headaches or migraines than black children without sickle cell disease. The study by the Centers for Disease Control and Prevention (CDC), "Health Status and Healthcare Use in a National Sample of Children with Sickle Cell Disease," was published in the American Journal of Preventive Medicine.

The study found that black children with sickle cell disease are four times more likely to have fair or poor health status, twice as likely to have recently visited a mental health professional and have received special educational or early intervention services more often compared with black children without sickle cell disease.

Sickle cell disease is a group of red blood cell disorders that is inherited, passed from parents to children. In sickle cell disease, the red blood cells become hard and sticky, and take on a sickle shape. When the C-shaped cells travel through small blood vessels, they clog the vessels and can block blood flow. In addition, the sickled cells die earlier than normal blood cells, which creates a constant shortage of red blood cells.

"In the United States, sickle cell disease is one of the most common genetic disorders; more than 20 percent of children with SCD had recently visited a health care provider such as an optometrist or an ophthalmologist, and had more than one visit to the emergency department in the past year," said Sheree Boulet, DrPH, with CDC’s Division of Blood Disorders. "The findings of this study emphasize the importance of screening children with sickle cell disease for thinking ability, hearing, and vision problems."

Further, despite the increased use of health care services, the data showed that more parents indicated that they could not get an appointment for their child soon enough (10.5 percent, compared to 3.9 percent of parents whose children did not have SCD), reported waiting too long in the doctor’s office (8.7 percent versus 4 percent), and could not get through to their doctor on the telephone (7.5 percent versus 1.8 percent).

"This study gives a better insight into the types of disabilities children with sickle cell disease have and can help health care providers plan comprehensive treatments for children with the disease," said Dr. Boulet.

The study analyzed data from the 1997–2005 National Health Interview Surveys (NHIS) to describe health status and health services use among black children 0-17 years of age with SCD.  The NHIS has monitored the health of the nation since 1957; it is the principal source of information on the health of the civilian noninstitutionalized population of the United States and is one of the major data collection programs of the National Center for Health Statistics (NCHS) which is part of the Centers for Disease Control and Prevention (CDC). NHIS data on a broad range of health topics are collected through personal household interviews.

For more information about CDC's work in blood disorders, please visit http://www.cdc.gov/ncbddd/blooddisorders/index.html.

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U.S. DEPARTMENT OF HEALTH AND HUMAN SERVICES