Abstracts

Rationale: Guidelines and consensus statements related to pediatric epilepsy surgery are uniformly lacking high quality published outcome data to support clinical decisions that impact likelihood of seizure freedom and optimizing outcomes beyond seizures. We address this need by leveraging current successful efforts of the Pediatric Epilepsy Research Consortium to establish a pediatric epilepsy surgical database by including neuropsychological outcome measures. Our initial aim was to finalize the data and methods for collection and establish an active collaborative network of pediatric epilepsy neuropsychologists whose engagement is critical for success.

Methods: September 2020 was the start of efforts to standardize data collection through a commonly available online platform (REDCap) and scale for multi-institutional implementation. Across 18 institutions, we describe the types and frequency of activities. We conducted two surveys: 1) to determine which measures were used at the institution and 2) to assess impact of participation in the network.

Results: Over 9 months, activities included four group (every 2-3 months) and one site specific meeting over teleconference. Group meetings had two meeting time options within days of each other and site-specific meetings were designed to include the site neuropsychologist and the site neurologist. Other personnel (e.g., research assistant) were encouraged to attend. 1^st survey: Consistency in measures used across sites ranged from (0-100%). Measures were included if >50% of sites were using the measure or through an iterative discussion a measure was deemed important to keep (e.g., new measure, used at a site with many cases, etc.). Within four months, 33 measures were finalized for inclusion to cover all cognitive domains across infancy to at least 18 years (Table). Across months 5-9, activities included finalizing financial agreements, IRB approvals, opening the database for data entry, and individualized site trainings (n=6). 2^nd survey (17 responses): On average, 69% of the neuropsychologists’ caseload was epilepsy. At 35% of sites, only one clinician sees presurgical epilepsy patients. 76% of neuropsychologists were expected to do research but only 18% had funding to do so. Impact of the collaborative included adjusting their protocols by adding measures or different norms, increasing their confidence in the measures they use, and 59% said they learned something new. 65% endorsed an impact on data management with 35% establishing a new local database. 100% believe they will be able to contribute data despite 47% also thinking there will be a barrier to overcome. 100% thought the meetings were worth the time and 94% endorsed an impact on their network of colleagues including 29% who improved their communication within their own epilepsy team.

Conclusions: In less than a year, a set of measures were finalized and ready for live data entry among 18 pediatric sites due to the collaboration of pediatric neuropsychologists experienced in working with epilepsy populations. Initial impact was high in several ways including clinical practice, database management, and professional communication/development. Importantly, all participants believed their participation was worth their time suggesting success not only in content but also efficiency despite having limited protected time to do the work.

Funding: Please list any funding that was received in support of this abstract.: Pediatric Epilepsy Research Foundation.