Leveraging expertise and optimizing clinical research: Initial success of a pediatric epilepsy surgery collaborative

Berl, Madison M.; Koop, Jennifer I.; Ailion, Alyssa; Bearden, Donald J.; Boyer, Katrina; Cooper, Crystal; Decrow, Amanda M.; Duong, Priscilla H.; Espe‐Pfeifer, Patricia; Gabriel, Marsha; Hodges, Elise K.; Marshall, David F.; McNally, Kelly; Molnar, Andrew E.; Olsen, Emily K.; Ono, Kim E; Patrick, Kristina E.; Paul, Brianna M.; Romain, Jonathan E.; Sepeta, Leigh N.; Stilp, Rebecca L.H.; Wilkening, Greta N.; Zaccariello, Michael J.; Zelko, Frank; Perry, Μ. Scott; Alexander, Allyson; Andrade‐Machado, Rene; Armstrong, Dallas; Auguste, Kurtis I.; Bolton, Jeffrey; Ciliberto, Michael A.; Coryell, Jason; Depositario-Cabacar, Dewi Frances T.; Eschbach, Krista; Gaillard, William D.; Gedela, Satya; González-Giraldo, Ernesto; Grinspan, Zachary M.; Hauptman, Jason S.; Javarayee, Pradeep; Karia, Samir; Manuel, Chad M.; Marashly, Ahmad; McCormack, Michael J.; McNamara, Nancy; Nangia, Srishti; Novotny, Edward J.; Numis, Adam; Olaya, Joffre; Oluigbo, Chima; Ostendorf, Adam P.; Reddy, Shilpa B; Romanowski, Erin Fedak; Samanta, Debopam; Shrey, Daniel W.; Singh, Rani K.; Sullivan, Joseph; Tatachar, Priya; Wong‐Kisiel, Lily C.

doi:10.1111/epi.17579

Cited by 5 publications

(3 citation statements)

References 27 publications

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“…There are currently efforts to collect neuropsychological data prospectively for epilepsy surgery patients across multiple sites in the USA. 75 These will represent an invaluable resource for clinical decision-making in the future. It might also be important to include measures of preoperative functional brain mapping, because patients in whom eloquent brain areas were resected have been found to have worse neuropsychological outcomes compared with those in whom eloquent areas were preserved.…”

Section: Discussionmentioning

confidence: 99%

Long-term neuropsychological trajectories in children with epilepsy: does surgery halt decline?

Eriksson,

Prentice,

Piper

et al. 2024

Brain

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Neuropsychological impairments are common in children with drug-resistant epilepsy. It has been proposed that epilepsy surgery may alleviate these impairments by providing seizure freedom; however, findings from prior studies have been inconsistent. We mapped long-term neuropsychological trajectories in children before and after undergoing epilepsy surgery, to measure the impact of disease course and surgery on functioning. We performed a retrospective cohort study of 882 children who had undergone epilepsy surgery at Great Ormond Street Hospital (1990-2018). We extracted patient information and neuropsychological functioning – obtained from IQ tests (domains: Full-Scale IQ, Verbal IQ, Performance IQ, Working Memory, and Processing Speed) and tests of academic attainment (Reading, Spelling and Numeracy) – and investigated changes in functioning using regression analyses. We identified 500 children (248 females) who had undergone epilepsy surgery (median age at surgery = 11.9 years, interquartile range = [7.8,15.0]) and neuropsychology assessment. These children showed declines in all domains of neuropsychological functioning in the time leading up to surgery (all p-values ≤ 0.001; e.g., βFSIQ = -1.9, SEFSIQ = 0.3, pFSIQ < 0.001). Children lost on average one to four points per year, depending on the domain considered; 27-43% declined by 10 or more points from their first to their last preoperative assessment. At the time of presurgical evaluation, most children (46-60%) scored one or more standard deviations below the mean (<85) on the different neuropsychological domains; 37% of these met the threshold for intellectual disability (Full-Scale IQ < 70). On a group level, there was no change in performance from pre- to postoperative assessment on any of the domains (all p-values > 0.128). However, children who became seizure-free through surgery showed higher postoperative neuropsychological performance (e.g., rrb-FSIQ = 0.37, p < 0.001). These children continued to demonstrate improvements in neuropsychological functioning over the course of their long-term follow-up (e.g., βFSIQ = 0.9, SEFSIQ = 0.3, pFSIQ = 0.004). Children who had discontinued antiseizure medication (ASM) treatment at one-year follow-up showed an eight-to-13-point advantage in postoperative Working Memory, Processing Speed, and Numeracy, and greater improvements in Verbal IQ, Working Memory, Reading, and Spelling (all p-values < 0.034) over the postoperative period compared to children who were seizure-free and still receiving ASMs. In conclusion, by providing seizure freedom and the opportunity for ASM cessation, epilepsy surgery may not only halt but reverse the downward trajectory that children with drug-resistant epilepsy display in neuropsychological functioning. To halt this decline as soon as possible, or potentially prevent it from occurring in the first place, children with focal epilepsy should be considered for epilepsy surgery as early as possible after diagnosis.

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Section: Discussionmentioning

confidence: 99%

Long-term neuropsychological trajectories in children with epilepsy: does surgery halt decline?

Eriksson,

Prentice,

Piper

et al. 2024

Brain

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“…A Research Electronic Data Capture (REDCap) survey was sent to neuropsychologists at the 20 U.S. pediatric hospitals involved in the PERC Surgery Workgroup. 16 Of note, although there are 260 total institutions listed in the National Association of Epilepsy Centers, only 46 of these are standalone pediatric Level 4 centers. As such, our survey includes 43% of these centers.…”

Section: Functional Mapping Surveymentioning

confidence: 99%

“…Our goal was to understand clinical functional mapping practices and the frequency of emerging ESM techniques across institutions. A Research Electronic Data Capture (REDCap) survey was sent to neuropsychologists at the 20 U.S. pediatric hospitals involved in the PERC Surgery Workgroup 16 . Of note, although there are 260 total institutions listed in the National Association of Epilepsy Centers, only 46 of these are standalone pediatric Level 4 centers.…”

Section: Survey Of Neuropsychologistsmentioning

confidence: 99%

The changing landscape of electrical stimulation language mapping with subdural electrodes and stereoelectroencephalography for pediatric epilepsy: A literature review and commentary

Reecher,

Bearden,

Koop

et al. 2024

Epilepsia

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Electrical stimulation mapping (ESM) is used to locate the brain areas supporting language directly within the human cortex to minimize the risk of functional decline following epilepsy surgery. ESM is completed by utilizing subdural grid or depth electrodes (stereo‐electroencephalography [sEEG]) in combination with behavioral evaluation of language. Despite technological advances, there is no standardized method of assessing language during pediatric ESM. To identify current clinical practices for pediatric ESM of language, we surveyed neuropsychologists in the Pediatric Epilepsy Research Consortium. Results indicated that sEEG is used for functional mapping at >80% of participating epilepsy surgery centers (n = 13/16) in the United States. However, >65% of sites did not report a standardized protocol to map language. Survey results indicated a clear need for practice recommendations regarding ESM of language. We then utilized PubMed/Medline and PsychInfo to identify 42 articles that reported on ESM of language, of which 18 met inclusion criteria, which included use of ESM/signal recording to localize language regions in children (<21 years) and a detailed account of the procedure and language measures used, and region‐specific language localization outcomes. Articles were grouped based on the language domain assessed, language measures used, and the brain regions involved. Our review revealed the need for evidence‐based clinical guidelines for pediatric language paradigms during ESM and a standardized language mapping protocol as well as standardized reporting of brain regions in research. Relevant limitations and future directions are discussed with a focus on considerations for pediatric language mapping.

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Epilepsy Impacts Families and Communities: Persistent Gaps and Inequities

Ostendorf

2023

Seminars in Pediatric Neurology

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Leveraging expertise and optimizing clinical research: Initial success of a pediatric epilepsy surgery collaborative

Cited by 5 publications

References 27 publications

Long-term neuropsychological trajectories in children with epilepsy: does surgery halt decline?

Long-term neuropsychological trajectories in children with epilepsy: does surgery halt decline?

The changing landscape of electrical stimulation language mapping with subdural electrodes and stereoelectroencephalography for pediatric epilepsy: A literature review and commentary

Epilepsy Impacts Families and Communities: Persistent Gaps and Inequities

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