INS NYC 2024 Program

Custom Content	Poster Session 09 Program Schedule 02/16/2024 03:30 pm - 04:45 pm Room: Shubert Complex (Posters 1-60) Poster Session 09: Epilepsy \| Oncology \| MS \| Infectious Disease Final Abstract #8 Poster Symposium: Neuropsychological Care in Early Life Epilepsies: From Referrals to Outcomes — Abstract 1 Neuropsychological Referral Practices in Early Life Epilepsy: A Survey of the Pediatric Epilepsy Research Consortium Don Bearden, Children's Healthcare of Atlanta, Atlanta, United States Natasha Ludwig, Kennedy Krieger Institute, Baltimore, United States Emily Spelbrink, Stanford, Stanford, United States Krista Eschbach, Children's Hospital Colorado, Aurora, United States Category: Epilepsy/Seizures Keyword 1: pediatric neuropsychology Objective: Children with early life epilepsy (ELE, i.e., seizure onset <3 years old) are vulnerable to cognitive sequelae associated with their epilepsy etiology, seizures, and treatment. However, it is not known what motivates providers to place referral for neurodevelopmental evaluation and to which developmental specialty (neuropsychology, therapy services, developmental pediatrics). This study aims to describe physician stated neurodevelopmental referral practices in ELE. Participants and Methods: An anonymous REDCap survey was sent to physician members (neurologists and epileptologists) of the Pediatric Epilepsy Research Consortium (PERC), representing > 70 different institutions in the United States, from March - May 2023. The survey assessed physician-reported referral practices for neurodevelopmental evaluation in children birth-3 years with epilepsy. The survey included specific questions about referral for neuropsychological evaluation and provider perceptions of and barriers to neuropsychological evaluation in this patient group. Pilot testing and cognitive interviewing was completed for content validity prior to survey distribution. Results: There were 63 respondents, 50 of whom fully completed the survey. hile most physicians place 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 as follows: early intervention (n=47, 94%), outpatient therapy (n=31, 62%), developmental pediatrics (n=22, 40%), neuropsychology (n=7, 14%), no referral (n=0). Indications for neuropsychology referrals were mostly educational planning (n=31, 62.0%) and epilepsy surgery (n=42, 87.5%). Eighteen respondents (36%) felt that neuropsychological evaluation was useful at all developmental stages and the remainder indicated that developmental stage matters when considering the utility of this evaluation. The most frequent limitation to referral for neuropsychology was the waitlist (n=45, 90%). Other limitations included difficulty with insurance (n=22, 44%), families not following up with testing/lack of interest in the evaluation (n=12, 24%), patient inability to complete evaluation (n=21, 42%), language barriers (n=10, 20%), and eight physicians (16%) indicated neuropsychological evaluation is not useful in this patient group. Two respondents (4%) reported they cannot obtain neuropsychological evaluation locally. Time to neuropsychological evaluation was 3-6 months in 40.4% (n=19) and 6-9 months in 23.4% (n=11), with lower frequencies at <3 months or >9 months. Neuropsychological testing was reported as being conducted through in-person (n=14, 29.2%) or hybrid (n=22, 45.8%) formats, but not via telemedicine only (n=0). Conclusions: For children birth-3 years with ELE, there is significant variability in neurodevelopmental referral practices by physicians within PERC, with some providers placing no routine referrals. A higher proportion of providers reported placing neuropsychology referrals for patients with ELE in the context of known developmental delay and was more frequently placed for educational planning or epilepsy surgery. These data highlight a need to develop standardized recommendations for neurodevelopmental evaluation in children with ELE. Furthermore, future research is needed to assess ongoing barriers to neuropsychological evaluation and to evaluate benefits of this service for this patient group.

Custom Content

02/16/2024
03:30 pm - 04:45 pm
Room: Shubert Complex (Posters 1-60)

Poster Session 09: Epilepsy | Oncology | MS | Infectious Disease

Final Abstract #8

Poster Symposium: Neuropsychological Care in Early Life Epilepsies: From Referrals to Outcomes — Abstract 1

Neuropsychological Referral Practices in Early Life Epilepsy: A Survey of the Pediatric Epilepsy Research Consortium

Don Bearden, Children's Healthcare of Atlanta, Atlanta, United States
Natasha Ludwig, Kennedy Krieger Institute, Baltimore, United States
Emily Spelbrink, Stanford, Stanford, United States
Krista Eschbach, Children's Hospital Colorado, Aurora, United States

Category: Epilepsy/Seizures

Keyword 1: pediatric neuropsychology

Objective:

Children with early life epilepsy (ELE, i.e., seizure onset <3 years old) are vulnerable to cognitive sequelae associated with their epilepsy etiology, seizures, and treatment. However, it is not known what motivates providers to place referral for neurodevelopmental evaluation and to which developmental specialty (neuropsychology, therapy services, developmental pediatrics). This study aims to describe physician stated neurodevelopmental referral practices in ELE.

Participants and Methods:

An anonymous REDCap survey was sent to physician members (neurologists and epileptologists) of the Pediatric Epilepsy Research Consortium (PERC), representing > 70 different institutions in the United States, from March - May 2023. The survey assessed physician-reported referral practices for neurodevelopmental evaluation in children birth-3 years with epilepsy. The survey included specific questions about referral for neuropsychological evaluation and provider perceptions of and barriers to neuropsychological evaluation in this patient group. Pilot testing and cognitive interviewing was completed for content validity prior to survey distribution.

Results:

There were 63 respondents, 50 of whom fully completed the survey. hile most physicians place 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 as follows: early intervention (n=47, 94%), outpatient therapy (n=31, 62%), developmental pediatrics (n=22, 40%), neuropsychology (n=7, 14%), no referral (n=0). Indications for neuropsychology referrals were mostly educational planning (n=31, 62.0%) and epilepsy surgery (n=42, 87.5%). Eighteen respondents (36%) felt that neuropsychological evaluation was useful at all developmental stages and the remainder indicated that developmental stage matters when considering the utility of this evaluation. The most frequent limitation to referral for neuropsychology was the waitlist (n=45, 90%). Other limitations included difficulty with insurance (n=22, 44%), families not following up with testing/lack of interest in the evaluation (n=12, 24%), patient inability to complete evaluation (n=21, 42%), language barriers (n=10, 20%), and eight physicians (16%) indicated neuropsychological evaluation is not useful in this patient group. Two respondents (4%) reported they cannot obtain neuropsychological evaluation locally. Time to neuropsychological evaluation was 3-6 months in 40.4% (n=19) and 6-9 months in 23.4% (n=11), with lower frequencies at <3 months or >9 months. Neuropsychological testing was reported as being conducted through in-person (n=14, 29.2%) or hybrid (n=22, 45.8%) formats, but not via telemedicine only (n=0).

Conclusions:

For children birth-3 years with ELE, there is significant variability in neurodevelopmental referral practices by physicians within PERC, with some providers placing no routine referrals. A higher proportion of providers reported placing neuropsychology referrals for patients with ELE in the context of known developmental delay and was more frequently placed for educational planning or epilepsy surgery. These data highlight a need to develop standardized recommendations for neurodevelopmental evaluation in children with ELE. Furthermore, future research is needed to assess ongoing barriers to neuropsychological evaluation and to evaluate benefits of this service for this patient group.