Many children with sickle cell anemia do not receive recommended preventive care
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Many children with sickle cell anemia do not receive guideline-concordant preventive care to reduce their risks for serious infections or stroke, according to research conducted at Children’s Hospital Los Angeles.
Antibiotics to prevent infections and annual transcranial Doppler ultrasound to assess stroke risk both are nationally endorsed quality standards for children with sickle cell anemia.
Investigators evaluated Medicare claims data from California and Georgia from 2010 to 2019.
Results showed only about 20% of children aged 3 months to 5 years received preventive antibiotics in a given year (22.2% in California and 15.5% in Georgia). In addition, only about half of children and adolescents underwent annual transcranial Doppler ultrasound (47.4% in California and 52.7% in Georgia).
Healio spoke with researcher Ashaunta T. Anderson, MD, MPH, MSHS, pediatrician at Children’s Hospital Los Angeles, about the findings and the steps that must be taken to improve preventive care for this patient population.
Healio: What motivated you to conduct this study?
Anderson: As a general pediatrician, I know that a lot of hard work goes into keeping children healthy, but we can’t really know if we’re doing a good job if we don’t measure our performance. This study gives us an opportunity to look at our performance when it comes to taking care of children with sickle cell anemia.
Healio: How did you conduct this study?
Anderson: We were fortunate to have partners at Centers for Disease Control and Prevention and folks who work at the Sickle Cell Data Collection Program in California and Georgia. With their help, we had access to insurance claims data — specifically Medicaid claims data — so we were able to ask our questions by looking at this insurance information. We had data from 2010 to 2019 for children who had laboratory-confirmed sickle cell anemia. We asked two key questions. First, children generally are advised to receive penicillin twice a day, every day, through age 5. We looked at the number of filled prescriptions for antibiotics like penicillin for kids with sickle cell.
Second, we checked for stroke risk among patients with sickle cell disease using an ultrasound to measure how fast blood is going to the brain. If it’s going too fast, we know that child has an increased risk for stroke. Children with sickle cell have increased risk for stroke, so they are supposed to have transcranial Doppler ultrasound annually from age 2 years through age 16 years.
Healio: Do you have any theories as to why these gaps in care exist?
Anderson: We tried to go back and ask some of those questions of the data. We looked at the issue of antibiotics in terms of who was prescribing them. Although it didn’t reach full statistical significance, we saw a trend toward the prescribing provider being an important clue. It seemed that if the prescribing provider was a pediatric hematologist, there was a greater chance a child would receive the number of days of filled penicillin prescriptions that they needed compared with if the prescriber was a general pediatrician. In Georgia, we were able to look at rural versus urban residency, and rural residency was associated with higher likelihood of receiving the proper antibiotic protection.
As patients got older, they were less likely to receive their ultrasound scans to assess stroke risk. However, when we looked at each year from 2010 to 2019, there was some improvement in rates of these scans. Perhaps general pediatricians need a reminder that patients with sickle cell anemia need these prescriptions written and filled. Younger children tend to see their pediatricians more often than adolescents, so maybe more work needs to be done to reach out to older kids to make sure they get their ultrasounds.
Healio: Why is it important to evaluate children with sickle cell anemia for stroke risk?
Anderson: We test children with sickle cell anemia for stroke risk because there is good evidence to show we can do something about it. Studies have shown that when children are on a monthly transfusion protocol, they can significantly decrease their risk for stroke. If the ultrasound is done and shows a child is at high risk for a stroke, they can be started on this monthly transfusion protocol to decrease that risk.
Healio: What are some potential solutions for addressing this gap in care?
Anderson: The first step is to raise awareness. It’s important to have more education to ensure pediatric hematologists and general pediatricians know what to do. We want to make sure these clinicians are following basic recommendations for patients with sickle cell anemia. We also want to make sure patients and families understand the importance of these measures.
Also, some quality improvements at the practice level would be beneficial. Clinics and hospitals can improve patient access to preventive care. If it’s difficult for families to get to the hospital or clinic for an ultrasound, can we provide transportation support? Can we make the scheduling process less confusing? Can we make the refilling process for the penicillin less onerous?
I also like to look at systemic or automatic approaches. In 2018, there was an opportunity for these measures to be included in the core set of quality measures that Medicaid requires of programs across the country. Unfortunately, Medicaid decided not to include them in their core set. That was a missed opportunity because, when you include these kinds of measures in something like the Medicaid program, you raise the visibility and you incentivize Medicaid and other payers to track performance on them. I would like to see something like that at the systemic level.
It’s important to emphasize that these are not just numbers. These are families, and these folks need to be included every step of the way in understanding the challenges and potential solutions to these challenges.
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For more information:
Ashaunta T. Anderson, MD, MPH, MSHS, can be reached asanderson@chla.usc.edu.
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