Sickle cell children may not get preventive care: Study
Just 1 in 5 took preventive antibiotics, half got annual ultrasounds
While children with sickle cell anemia — the most common form of sickle cell disease — are vulnerable to serious infections and stroke, many don’t receive the antibiotics or annual ultrasounds that national guidelines suggest could keep them healthier, a study found.
Only about 1 in 5 children took the recommended twice-daily doses of antibiotics to prevent infections, and about half got annual ultrasounds to flag any risk for stroke, according to a comparison of Medicaid claims data from California and Georgia from 2010 to 2019.
“What we found, unfortunately, was not what we’d hoped for,” Ashaunta Anderson, MD, a pediatrician at Children’s Hospital Los Angeles, in California, and one of the study’s authors, said in a hospital press release.
The findings parallel those of a study of more than 5,000 children in Michigan and New York, suggesting there are gaps in meeting quality standards nationwide.
“We are encouraged that these kinds of measurements can be tracked in every state in the country,” Anderson said. “We can start to do quality improvement programs in every clinic and every hospital, starting with these two measures, in order to deliver better care for children with sickle cell anemia.”
The study, “National Quality Indicators in Pediatric Sickle Cell Anemia,” was published in the journal Pediatrics.
Medicaid data reveal discrepancies
Sickle cell disease causes red blood cells to warp into a crescent-like shape. These misshapen red blood cells don’t last as long as normal, rounded ones, which leads to anemia, or a shortage of red blood cells. The cells also tend to clump together, restricting or blocking blood flow to tissues and organs.
Damage to the spleen, a fist-shaped organ that protects the body by clearing bacteria and other threats, may put sickle cell children at risk for serious infections. Staying current on vaccinations and taking twice-daily doses of antibiotics, such as penicillin, can help prevent those infections.
Sickle cell children also are more likely to have strokes, which occur when blood supply to the brain is cut off. A transcranial Doppler ultrasound, which uses sound waves to assess blood flow in the brain, may predict stroke risk. Children deemed at higher risk of stroke can receive regular blood transfusions to reduce that risk.
Here, the researchers used data from the Sickle Cell Data Collection program to determine how many children from low-income families covered by Medicaid insurance received the recommended quality measures.
Among 3- to 5-year-olds, only 22.2% in California and 15.5% in Georgia received antibiotics for at least 300 days each year, as guidelines suggest. Children in rural Georgia were more likely to receive antibiotics than those in cities, the study found.
Access to specialists played a role in care, the study showed. Children who saw pediatric hematologists, rather than general pediatricians, were more likely to receive preventive antibiotics.
In California, 47.4% of 2- to 15-year-olds received at least one ultrasound each year. In Georgia, the figure was 52.7%. As children grew older, they were less likely to get annual ultrasounds.
The proportion of children screened for stroke increased over the years of the study, as better data collection by states led to more awareness, Anderson said.
Sickle cell children may lack access to care, transportation
One ongoing concern, Anderson noted, is that some parents or other caregivers may not know all of the services children with sickle cell should be provided.
“A reason why these quality standards are not being met could be lack of information,” Anderson said. “Patients and families may not know the importance of twice-daily antibiotics and getting annual scans for stroke risk up to age 16.”
Healthcare providers may be unfamiliar with national guidelines, and patients may lack access to hospitals or clinics that can perform and interpret ultrasounds, according to Children’s Hospital Los Angeles. Further, refilling a prescription every two weeks can be a challenge for a family that struggles with finances or transportation.
The hospital’s Sickle Cell Disease Program focuses on “developing innovations in safer care, such as stroke prevention,” said Thomas Coates, MD, section head of hematology at the hospital and one of the study’s researchers. The hospital also provides specialist care and access to clinical trials, as well as “practical support” like transportation to appointments, he said.
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