Researchers looked at 190 children with cystic fibrosis to understand how often they develop iron deficiency—a condition where the body doesn’t have enough iron to make healthy blood. They found that about half of these children had low iron levels, even though many didn’t show obvious symptoms. The study also checked whether giving kids iron supplements or dietary advice helped improve their iron levels. While some treatments showed promise, the researchers found that current approaches to treating iron deficiency in children with cystic fibrosis need improvement, and doctors should check iron levels in these children every year.

The Quick Take

  • What they studied: How often children with cystic fibrosis develop iron deficiency and whether treatments like iron supplements or dietary changes help fix the problem.
  • Who participated: 190 children with cystic fibrosis between ages 1 and 16 years old who visited a hospital in London during 2021 and 2022.
  • Key finding: About half of the children (51-54%) had low iron levels. When doctors gave kids iron supplements or dietary advice, the treatments didn’t work as well as expected, though kids treated for the most severe iron deficiency (iron deficiency anemia) did show some improvement in their iron levels.
  • What it means for you: If you have a child with cystic fibrosis, doctors should check their iron levels every year. While current treatments help a little, better approaches are needed. Talk to your child’s doctor about the best way to manage iron levels.

The Research Details

This study looked back at medical records from 190 children with cystic fibrosis who were seen at a hospital in London. The researchers checked blood tests from two different times (2021 and 2022) to see how many children had iron problems and whether treatments helped. They measured three things in the blood: ferritin (a protein that stores iron), hemoglobin (the part of blood that carries oxygen), and MCV (the size of red blood cells). Using these measurements, they could tell if a child had low iron stores, early-stage iron deficiency, or severe iron deficiency anemia.

The doctors also looked at what treatments the children received—some got advice about eating iron-rich foods, while others got iron supplements as pills or liquids. The researchers compared how much the children’s iron levels changed between the two time periods, depending on whether they received treatment or not.

This research approach is important because it shows real-world results from actual patient care rather than a controlled experiment. By looking at medical records over time, researchers can see what’s really happening to children with cystic fibrosis in everyday medical practice. This helps doctors understand which treatments actually work and which ones need improvement.

This study has some strengths: it included a decent number of children (190) and looked at actual patient records over time. However, it also has limitations. The researchers couldn’t control all the factors that might affect iron levels, and they didn’t randomly assign children to different treatments—they just looked at what doctors had already done. This means we can’t be completely sure that the treatments caused the results we see.

What the Results Show

The study found that iron deficiency is very common in children with cystic fibrosis. In 2021, about 63% of children had some kind of iron problem, and in 2022, this dropped slightly to 54%. The most common problem was low iron stores without anemia (about 51% of children), which means their bodies weren’t storing enough iron but they weren’t yet sick from it.

When the researchers looked at treatments, they found mixed results. Sixty children received dietary advice about eating more iron-rich foods. Six children with early-stage iron deficiency got iron supplements, and seven children with severe iron deficiency anemia got iron supplements. When doctors checked the children’s blood tests a year later, the treatments didn’t seem to make much difference overall. However, the seven children who were treated for severe iron deficiency anemia did show improvement—their ferritin levels (iron storage) went up, which is a good sign.

Interestingly, children who were taking a newer type of cystic fibrosis medicine called ‘highly effective modulator therapy’ showed better improvement in their red blood cell size, which suggests this medicine might help with iron problems.

The study also found that the proportion of children with any kind of abnormal iron status decreased from 2021 to 2022 (from 63% to 54%), which is encouraging. However, the specific types of iron deficiency didn’t change much between the two years. This suggests that while some improvement is happening overall, the current treatments aren’t strong enough to make a big difference in most children.

Iron deficiency in children with cystic fibrosis hasn’t been studied as much as it has in adults, so this research fills an important gap. Previous studies in adults with cystic fibrosis showed that iron deficiency is a real problem, and this study confirms it’s also common in children. However, this is one of the first studies to look carefully at whether current treatments actually work in children.

This study has several important limitations. First, the researchers only looked at children at one hospital in London, so the results might not apply to children in other places. Second, they couldn’t control for all the things that might affect iron levels, like what the children ate or other medicines they took. Third, the study only lasted one year, so we don’t know if treatments work better over longer periods. Finally, because doctors chose which children got treated and which didn’t (rather than randomly assigning them), we can’t be completely sure the treatments caused the results we see.

The Bottom Line

Children with cystic fibrosis should have their iron levels checked at least once a year. If low iron is found, doctors should consider iron supplements or dietary changes, though families should know that current treatments don’t always work as well as we’d like. Children taking newer cystic fibrosis medicines may have better outcomes. More research is needed to find better ways to treat iron deficiency in this group.

This research is most important for children with cystic fibrosis and their families, as well as doctors who care for them. It’s less relevant for people without cystic fibrosis, though the findings might eventually help doctors understand iron deficiency better in general.

If a child starts iron supplements or makes dietary changes, it may take several months to see improvement in blood iron levels. Annual check-ups are needed to track progress over time.

Want to Apply This Research?

  • Track annual iron blood test results (ferritin, hemoglobin, and MCV levels) in the app to monitor trends over time and share with your child’s doctor.
  • Set a reminder for annual iron level check-ups and log dietary sources of iron (red meat, beans, fortified cereals) to help manage iron intake between doctor visits.
  • Create a yearly tracking dashboard showing iron test results over time, with alerts for when annual testing is due, and share reports with your child’s cystic fibrosis care team.

This research describes medical findings about iron deficiency in children with cystic fibrosis. It is not a substitute for professional medical advice. If your child has cystic fibrosis or you suspect iron deficiency, please consult with your child’s doctor or a pediatric specialist. Do not start, stop, or change any treatments without medical guidance. This study shows that current treatments have limited effectiveness, so working closely with your healthcare team is especially important.