Nearly three of every five children diagnosed with epilepsy do not take their anti seizure medicine as prescribed over the first six months of treatment.
The pattern is usually established within the first month and having a lower socioeconomic status raises the risk of non adherence, said study author Avani Modi, an assistant professor of pediatrics at the University of Cincinnati College of Medicine and Cincinnati Children's Hospital Medical Center.
"If they start well, they continue to do well," she said. "If they start not so well, they continue to do not so well."
The study is published in the April 27 issue of the Journal of the American Medical Association.
According to the Epilepsy Foundation, the brain disorder affects about 3 million Americans. There are 325,000 children under 15 with epilepsy in the United States, according to background information in the study.
While it's well-established among adults with epilepsy that not taking medicine as recommended is linked with continued seizures and other problems, less is known about the long-term and short-term effects on children who don't take their medicines as prescribed.
So, Modi looked at 124 children, aged 2 to 12, newly diagnosed with epilepsy. The children's caregivers received a medicine bottle with a special cap that electronically recorded when the bottle was opened and closed, which allowed the investigators to monitor the adherence to the drug prescribed.
The percentage of those not adhering -- 58 percent -- was a surprise, said Modi, who had found a 20 percent noncompliance rate in a previous study.
Only 42 percent had near perfect adherence, she found. The others had early problems with adherence, either mild, moderate or severe. Some had delayed problems with adherence, starting out well but falling off.
The reasons for this may vary, Modi speculated. Some parents may be in denial that their child has epilepsy. Some may think the risk of the drug outweighs the risk of seizures. Some may fear adverse events.
But her data suggests that the frequency of seizures and adverse events did not play a role in determining how well the children adhered to the medication schedule.
Modi did find that the higher a family's socioeconomic status, the more closely the children stuck to the medicine schedule.
For parents of newly diagnosed children, Modi said, one message is to establish a medicine-taking routine early. If they establish a routine from the start, she said, it will increase the chances of adherence.
She asks families: "Can you pair the medicine with things already established?" For instance, if a child brushes his teeth at 8 a.m., establish that as medication time.
Modi has been a consultant for Novartis Pharmaceuticals Inc., which has an interest in anti-epileptic drugs.
The study results provide valuable information about how many children don't take their epilepsy medication, said Dr. Orrin Devinsky, director of the Comprehensive Epilepsy Center at the NYU Langone Medical Center.
"Nonadherence is an important factor in poor seizure control for many children and adults with epilepsy," he said. "This study highlights both the high rate of non adherence among children with newly diagnosed epilepsy and the very powerful role of socioeconomic status on predicting no adherence."
Doctors need to increase their efforts to educate parents and patients about the need to stick to taking medicine as prescribed, Devinsky said.
Obtaining information on the patterns of adherence is valuable, said Dr. Michael Rapoff, the Ralph L. Smith Professor of Pediatrics at the University of Kansas Medical Center in Kansas City.
Rapoff's area of research is on treatment adherence in children with arthritis and asthma. "If this [new study result] holds up in other studies, we will be able to identify early on what the [pattern] is," he said.
The electronic monitoring used is "considered one of the most objective ways of monitoring adherence," Rapoff added.