How Close Are We? Neuropsychologic Assessment in New-Onset Pediatric Epilepsy

Abstract

Background

Approximately half of all children and adults newly diagnosed with epilepsy also show behavioral and/or cognitive difficulties upon assessment. Although neuropsychological assessment is recommended as a routine part of care at epilepsy onset, access to assessment is often restricted by many factors. To better define the extent of the problem, we surveyed neurologists and neuropsychologists in the United States and Canada to clarify how frequently youth with new-onset epilepsy are referred for and undergo neuropsychological assessment.

Methods

In 2022, online surveys for neurologists and neuropsychologists were disseminated via the American Epilepsy Society newsletter, professional listservs, and colleague recruitment.

Results

Of the 39 neurologists and 47 neuropsychologists who responded, most were in academic medical centers (neurologists = 90%, neuropsychologists = 77%) and affiliated with comprehensive epilepsy centers (neurologists = 95%, neuropsychologists = 85%). Most practice settings had less than three pediatric epilepsy neuropsychologists as reported by neurologists (77%) and neuropsychologists (64%). Neurologists and neuropsychologists largely agreed that neuropsychologic assessment of patients with new-onset pediatric epilepsy occurred in 0% to 25% of cases (neurologists = 67%, neuropsychologists = 70%). Most neurologists (69%) concurred that neuropsychological assessment contributes substantially to the care of nonsurgical epilepsy patients. However, a sizable percentage (31%) indicated that they only “sometimes” knew when to refer.

Conclusions

Children with new-onset epilepsy do not routinely undergo neuropsychological assessment despite it being a recommended standard of care. Some of the barriers were limited availability of neuropsychologists, insurance denials, and difficulty accessing care.