RARE Daily

Study Finds Many Kids with Sickle Cell Anemia Lack Preventative Care

March 7, 2024

Rare Daily Staff

Sickle cell anemia leaves children with the condition at risk of developing serious infections and strokes, but many don’t get preventative care that could help them stay healthier for longer, a new study found.

Sickle cell anemia is a chronic, genetic blood disease that distorts the doughnut-shaped red blood cells that carry oxygen in blood into sickle shapes, leading them to clump in vessels and block blood flow to organs. These cause painful episodes in children and can lead to complications, including joint pain, infections, organ damage and stroke. The condition affects 100,000 people in the United States, including approximately 1 out of every 400 African Americans and about 1 in 19,000 Latinos.

The study from researchers at Children’s Hospital Los Angeles and published in the journal Pediatrics compared Medicaid claims data from California and Georgia from 2010 to 2019. The researchers found that only about 20 percent of children from 3 months to 5 years old with sickle cell anemia received preventative antibiotics in a given year, while about half of children and adolescents between the ages of 2 to 15 received an annual transcranial Doppler ultrasound.

Twice-daily doses of antibiotics, given consistently, can protect young children with sickle cell anemia from developing serious infections. Children and adolescents with abnormal ultrasounds have a higher-than-normal risk of stroke, but once identified, their risk can be significantly reduced by receiving regular blood transfusions.

“A reason why these quality standards are not being met could be lack of information,” said Ashaunta Anderson, pediatrician at Children’s Hospital Los Angeles, who led the study. “Providers may be unfamiliar with the guidelines. Patients and families may not know the importance of twice-daily antibiotics and getting annual scans for stroke risk up to age 16.”

The researchers also noted that patients may lack access to hospitals and clinics that can perform and interpret this kind of ultrasound. Refilling the penicillin prescription every two weeks can be challenging if a family lacks transportation or money.

Children with private insurance generally meet the standards for preventative care, but because of health care disparities, the quality of care received by children from low-income families insured by Medicaid varies by state and can depend on whether the child’s family lives in an urban or a rural area. Children with sickle cell anemia were more likely to receive antibiotics if they lived in rural Georgia than if they lived in a city.

Trends in the data also suggested that patients had a greater chance of receiving preventative antibiotics if their provider was a specialist—a pediatric hematologist—instead of their general pediatrician.

Photo: Ashaunta Anderson, pediatrician at Children’s Hospital Los Angeles and study leader

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