Los Angeles, California - A new study by doctors at UCLA sheds light on the challenges faced by parents of children with epilepsy.

 

The study, published online by the journal Epilepsia, examines the amount of time it takes for children to receive needed medical care once their anti-seizure medication stops working effectively. The findings highlight the need for health care providers to identify and remove obstacles to comprehensive epilepsy care, said Christine Baca, the study’s first author and an assistant professor in residence of neurology at UCLA.

“These data provide evidence for a spectrum of parent-, provider- and health system–based barriers that influence the ease of getting to and the timeliness of receipt of pediatric epilepsy surgery,” Baca said.

The study found that the average time from the onset of epileptic seizures until surgery was 5.4 years. And, in more than two-thirds of children, the time from the second failure of anti-seizure drugs - which is when children should be referred to a comprehensive epilepsy center for surgical evaluation - to the time that they actually were referred for surgical evaluation was more than one year.

“We’ve been bouncing around hospitals for four to five months,” one parent told the researchers. “Not that the care was poor, but there’s a point where it surpasses the local specialty.”

The study was funded by the Epilepsy Foundation of America.