Neurodevelopmental Referral Practices in Early Life Epilepsy: A Survey of the Pediatric Epilepsy Research Consortium
Abstract number :
3.46
Submission category :
11. Behavior/Neuropsychology/Language / 11B. Pediatrics
Year :
2023
Submission ID :
1445
Source :
www.aesnet.org
Presentation date :
12/4/2023 12:00:00 AM
Published date :
Authors :
Presenting Author: Krista Eschbach, MD – University of Colorado School of Medicine, Children's Hospital Colorado
Emily Spelbrink, MD, PhD – Stanford University School of Medicine; Donald Bearden, PhD – Emory University School of Medicine, Children’s Healthcare of Atlanta; Natasha Ludwig, PhD – Kennedy Krieger Institute/Department of Psychiatry and Behavioral Sciences, Johns Hopkins School of Medicine
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 through May 2023. The survey assessed physician-stated neurodevelopmental referral practices for children < 3 years old with epilepsy, including case-based scenarios.
Results:
There were 50 fully completed surveys. Most respondents were epileptologists (n=48, 96%), in academic practice (n=43, 86%). While most physicians report placing at least one routine neurodevelopmental referral for all children with ELE, including early intervention (n=30, 61.2%), outpatient therapy (n=6, 12.2%), and developmental pediatrics (n=7, 14.3%), over one-third do not place any (n=18, 36.7%). Neuropsychological evaluation was not selected as a routine referral in ELE by any respondents. In patients with ELE and known developmental delay, the referral practices increase; early intervention (n=47, 94%), outpatient therapy (n=31, 62%), developmental pediatrics (n=22, 40%), neuropsychology (n=7, 14%), no referral (n=0). When presented with a patient case of myoclonic epilepsy of infancy with normal development, 58% (n=29) of respondents indicated they would place no neurodevelopmental referrals. Referrals to therapy services (PT/OT/ST) (n=7, 14%), developmental pediatrics (n=8, 16%), and neuropsychology (n=4, 8%) were selected by a small number of respondents. In a case of an infant with Dravet syndrome with no current developmental concerns, 14% (n=7) of physicians would place no neurodevelopmental referrals, whereas 54% (n=27) would refer for therapy services, 40% (n=20) developmental pediatrics, and 16% (n=8) neuropsychology. For infantile epileptic spasms syndrome with regression, nearly all respondents would place a neurodevelopmental referral [therapy services, n=44 (88%), developmental pediatrics, n=25 (50%), neuropsychology, n=5 (10%)]. In a toddler with epilepsy with myoclonic-atonic seizures and developmental plateau, neurodevelopmental referrals were selected by all but one respondent, including therapy services (n=40, 80%), developmental pediatrics (n=21, 42%), and neuropsychology (n=16, 32%).
Conclusions:
There is variability in neurodevelopmental referral practices between physicians and epilepsy syndromes. In the setting of ELE with developmental plateau or regression, physicians were more likely to place referrals for neurodevelopmental evaluation. However, there remains a deficit in referral for patients at high-risk for delay and variability in what specialty or combination of specialties is selected for evaluation. This highlights a need to develop standardized recommendations and demonstration of outcome benefit for neurodevelopmental evaluations in ELE.
Funding: REDCap supported by NIH/NCATS Colorado CTSA Grant UL1 TR002535.
Behavior