Stroke screening lacking in children with sickle cell anemia

Many children with sickle cell anemia are not receiving the recommended screening for stroke, according to the Centers for Disease Control and Prevention (CDC).

Though stroke is a common complication of sickle cell anemia, a CDC Vital Signs report revealed that less than half of pediatric patients aged 2 to 16 years with the disease receive screening for stroke. This has led to children not receiving valuable medication such as hydroxyurea for reduction of pain and acute chest syndrome.

Sickle cell anemia is the most severe sickle cell disease, primarily affecting Black individuals. An estimated 100,000 Americans are affected by sickle cell anemia, and childhood stroke is most often caused by the disease.

Screening and hydroxyurea use were most often seen in children with high health care use and those with prior complications. Forty-seven percent of children aged 2 to 9 years and 38% of children aged 10 to 16 years receive an ultrasound for stroke risk. Hydroxyurea is used by 2 in 5 children aged 2 to 9 years with sickle cellanemia, and half of children aged 10 to 16 years.

“We must take action to ensure that children with sickle cell anemia are receiving potentially lifesaving treatment,” said Debra Houry, MD, MPH, CDC acting principal deputy director. “The pain and complications these children often experience can be excruciating and debilitating and can last for hours, days, or even weeks. Preventive care and medicines, such as hydroxyurea, can help ease the pain and suffering these children go through, and may extend their lives.”

According to Karen Remley, MD, MPH, director of the CDC’s National Center on Birth Defects and Developmental Disabilities, sickle cell anemia can shorten an individual’s expected lifespan by over 20 years. However, many people face barriers for screening and treatment such as structural racism and concerns from parents and providers.

To help children with sickle cell anemia receive the care they need, health care providers can work screening into a single health care visit, while institutions adopt reporting systems to track and respond to racist behavior. Health care providers can also work with policy makers to reverse the impact of structural racism on funding, research, and policy toward sickle cell anemia.

Parents can talk to health care providers to arrange a screening and figure out the next steps. To connect these parents to the resources they need, community-based organizations can develop resources for patients with sickle cellanemia and health care providers.

Reference

Many children with sickle cell anemia notreceiving lifesaving screening and treatment. Centers for Disease Control and Prevention. September 20, 2022. Accessed October 24, 2022. https://www.cdc.gov/media/releases/2022/s0920-vs-sickle-cell-anemia.html