Unexpected Findings from Routine Brain Scans Highlight Need for Guidelines

The results of a recent series of MRI scans given to children enrolled in a study of sickle cell disease at Johns Hopkins Children’s Center, revealed unexpected brain abnormalities. Though the findings were mostly benign, researchers at Hopkins Children’s, led by Lori Jordan, MD, PhD, believe that the results of these scans highlight the need for a protocol to assist pediatricians in discussing these findings with parents.

Among the 953 children enrolled in the study, 63 (6.6%), had a total of 68 abnormal brain findings. None of the children required emergency treatment of follow-up, and only six (0.6%) needed urgent follow-up, for changes that were suggestive of slow-growing tumors and Chiari malformation type 1, a structural defect where brain tissue extends into the spinal canal. The researchers note that none of the children who needed urgent follow-up care had clinical symptoms that suggested a problem. Additionally, they emphasize that because none of the study findings were related to the underlying sickle cell disease, the findings may also apply generally to healthy children.

In sharing the results, the researchers’ primary concern is how pediatricians handle talking to parents and loved ones about these findings. According to the Hopkins team, such unexpected findings—especially ones like these, where the clinical significance is not immediately clear—can lead to more tests and fear that may not be warranted. Senior study investigator John Strouse, MD, PhD, suggests that pediatricians need to prepare for these kinds of conversations, adding that the lack of guidelines for dealing with these kinds of findings may make some pediatricians feel so unprepared that they forego the conversation entirely and “simply refer the patient to a neurologist or a neurosurgeon for consultation.”

“Helpful as it is, imaging technology can open a Pandora’s box, sometimes showing us things we didn’t expect to see and are not sure how to interpret,” said Jordan, lead author of the Pediatrics paper on the study.