Neurodevelopmental Referral Practices in Early Life Epilepsy (ELE): A Survey of the Pediatric Epilepsy Research Consortium
AUTHORS
Krista Eschbach MD, Emily M Spelbrink MD, PhD, Donald J Bearden PhD, Natasha N Ludwig PhD
ABSTRACT
RATIONALE:
Children with early life epilepsy (ELE), defined as seizure onset <3 years old, are at risk for cognitive sequelae associated with the etiology of their epilepsy, seizure burden, and treatment.
This study characterizes current neurodevelopmental referral practices in ELE and evaluates if there is practice variability in neurodevelopmental referrals for different epilepsy syndromes.
METHODS:
An anonymous REDCap survey was sent to physician members of the Pediatric Epilepsy Research Consortium (PERC), representing > 70 different institutions in the United States, from March - May 2023.
The survey assessed physician-stated neurodevelopmental referral practices for children <3 years old with epilepsy, including case-based scenarios.
RESULTS:
50 fully completed surveys, mostly by epileptologists (n=48, 96%), in academic practice (n=43, 86%).
The majority of respondents report placing at least one routine neurodevelopmental referral for all children with ELE, most frequently early intervention (n=30, 61.2%), although over one-third do not place any neurodevelopmental referral (n=18, 36.7%).
No respondents selected neuropsychology evaluation as a routine referral for all patients with ELE.
In patients with known developmental delay, neurodevelopmental referral practices increase.
CONCLUSION:
There is variability in neurodevelopmental referral practices between physicians and epilepsy syndromes.
This highlights a need to develop standardized recommendations and demonstration of outcome benefit for neurodevelopmental evaluations in ELE.