Children of color face delays in treating infantile spasms, study finds

Health

The study, published in Epilepsia, looked at a group of 100 children with infantile spasms who were diagnosed at Boston Children’s Hospital between January 2019 and May 2022.

By Erin Blakemore, Washington Post

January 30, 2024 | 8:46 AM

Prompt diagnosis and treatment of infantile epileptic spasms syndrome, a severe seizure disorder beginning in infancy, can prevent developmental delays. But non-Hispanic Black children are less likely than their white counterparts to get timely treatment for infantile spasms, a recent analysis suggests.

The study, published in Epilepsia, looked at a group of 100 children with infantile spasms who were diagnosed at Boston Children’s Hospital between January 2019 and May 2022. Most children with the disorder will have delays regardless of the timing of diagnosis and treatment, but early treatment can help head off more severe consequences.

Also known as West syndrome, infantile spasms typically begin between 3 and 8 months of age. The brief seizures – sometimes hundreds a day – involve a sudden stiffening of the baby’s body, earning the nickname “jackknife seizures” because some babies’ upper bodies and knees bend inward while their arms fling outward during the seizures. The condition’s causes can vary, and though it is treatable and usually subsides by age 4, it causes intellectual disabilities in most children and is associated with later epilepsy and death.

The infants studied were an average of 7.6 months old when they had their first symptoms, and they received a diagnosis at an average of 9.4 months of age. But the age of diagnosis varied among races, with Black, non-Hispanic children being diagnosed an average of more than a month after their white counterparts.

The delays persisted when it came to receiving standard treatments: A quarter of the children of white, non-Hispanic parents had an initial treatment delay, compared to nearly half of the children of Black, Indigenous and other parents of color.

Delays were even more marked once the infant was referred to a neurologist. At that point in the process, 10.7 percent of the children of white parents had a treatment delay, compared with 38.5 percent of the children of parents of color.

The results reflect other studies showing persistent gaps between treatment times for white and non-white children, the researchers write.

Time is of the essence when it comes to treatment, with delays of as little as a week associated with worse outcomes, the researchers note.

In response to the research, Boston Children’s Hospital developed an open-access training resource to help front-line providers hone their diagnosis skills. The curriculum includes family-contributed photos and videos showing infantile spasms in an effort to help providers better identify the fleeting seizures, the hospital says in a news release.

“We have a moral imperative to address inequities in care affecting children with IESS,” the researchers conclude.