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Neurobehavioral outcomes following epilepsy surgery in tuberous sclerosis complex: A retrospective study

Pearsson, Kevin LU orcid ; Selby, Mikaela ; Broekhuizen, Ellen ; Pijs, Daan ; Stone, Scellig ; Sahin, Mustafa ; Reilly, Colin ; Ailion, Alyssa and Peters, Jurriaan (2026) In Epilepsy & Behavior 185. p.1-9
Abstract
Introduction Tuberous sclerosis complex (TSC) is a rare genetic disorder with a high prevalence of drug-resistant epilepsy. In such cases, epilepsy surgery may render 60% of suitable candidates seizure-free. Although seizure reduction may contribute to improvements in cognitive or language skills, little is known about neurobehavioral changes overall. Methods This retrospective single-center study included children with TSC who underwent epilepsy surgery and had ≥ 12 months of follow-up data. We collected pre- and postoperative neurobehavioral data, structured around the TSC-Associated Neuropsychiatric Disorders (TAND) questionnaire, from medical and neuropsychological records. Surgical outcomes were dichotomized as seizure-free or not... (More)
Introduction Tuberous sclerosis complex (TSC) is a rare genetic disorder with a high prevalence of drug-resistant epilepsy. In such cases, epilepsy surgery may render 60% of suitable candidates seizure-free. Although seizure reduction may contribute to improvements in cognitive or language skills, little is known about neurobehavioral changes overall. Methods This retrospective single-center study included children with TSC who underwent epilepsy surgery and had ≥ 12 months of follow-up data. We collected pre- and postoperative neurobehavioral data, structured around the TSC-Associated Neuropsychiatric Disorders (TAND) questionnaire, from medical and neuropsychological records. Surgical outcomes were dichotomized as seizure-free or not seizure-free. Results Of 21 surgeries, 13 (62%) achieved complete seizure freedom, and 15 (71%) achieved seizure freedom from the targeted seizure type. The most prevalent TAND problems at baseline were in language (n = 19), motor skills (n = 17), and attention (n = 13). After surgery, 18 (86%) showed improvement in at least one cluster, most often language (n = 12) or attention (n = 7). Postoperative behavioral worsening in at least one cluster was observed in 13 (62%), most often in repetitive behaviors (n = 5) and tantrums (n = 4). Surgical outcomes were unrelated to the improvement or worsening of symptoms. Conclusion Neurobehavioral improvement was often observed following epilepsy surgery in TSC, with seizure outcomes unrelated to neurobehavioral outcomes. However, some worsening of behavior was observed. Many TAND items were not routinely documented in the clinical records, underscoring the need for a more structured, prospective approach to neuropsychiatric comorbidity assessment in TSC. (Less)
Abstract (Swedish)
Introduction Tuberous sclerosis complex (TSC) is a rare genetic disorder with a high prevalence of drug-resistant epilepsy. In such cases, epilepsy surgery may render 60% of suitable candidates seizure-free. Although seizure reduction may contribute to improvements in cognitive or language skills, little is known about neurobehavioral changes overall. Methods This retrospective single-center study included children with TSC who underwent epilepsy surgery and had ≥ 12 months of follow-up data. We collected pre- and postoperative neurobehavioral data, structured around the TSC-Associated Neuropsychiatric Disorders (TAND) questionnaire, from medical and neuropsychological records. Surgical outcomes were dichotomized as seizure-free or not... (More)
Introduction Tuberous sclerosis complex (TSC) is a rare genetic disorder with a high prevalence of drug-resistant epilepsy. In such cases, epilepsy surgery may render 60% of suitable candidates seizure-free. Although seizure reduction may contribute to improvements in cognitive or language skills, little is known about neurobehavioral changes overall. Methods This retrospective single-center study included children with TSC who underwent epilepsy surgery and had ≥ 12 months of follow-up data. We collected pre- and postoperative neurobehavioral data, structured around the TSC-Associated Neuropsychiatric Disorders (TAND) questionnaire, from medical and neuropsychological records. Surgical outcomes were dichotomized as seizure-free or not seizure-free. Results Of 21 surgeries, 13 (62%) achieved complete seizure freedom, and 15 (71%) achieved seizure freedom from the targeted seizure type. The most prevalent TAND problems at baseline were in language (n = 19), motor skills (n = 17), and attention (n = 13). After surgery, 18 (86%) showed improvement in at least one cluster, most often language (n = 12) or attention (n = 7). Postoperative behavioral worsening in at least one cluster was observed in 13 (62%), most often in repetitive behaviors (n = 5) and tantrums (n = 4). Surgical outcomes were unrelated to the improvement or worsening of symptoms. Conclusion Neurobehavioral improvement was often observed following epilepsy surgery in TSC, with seizure outcomes unrelated to neurobehavioral outcomes. However, some worsening of behavior was observed. Many TAND items were not routinely documented in the clinical records, underscoring the need for a more structured, prospective approach to neuropsychiatric comorbidity assessment in TSC. (Less)
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author
; ; ; ; ; ; ; and
organization
publishing date
type
Contribution to journal
publication status
published
subject
keywords
Drug-resistant epilepsy, Epilepsy surgery, Pediatric neurosurgery, TSC-associated neuropsychiatric disorders, Tuberous sclerosis complex
in
Epilepsy & Behavior
volume
185
article number
111303
pages
1 - 9
publisher
Elsevier
external identifiers
  • pmid:42805032
ISSN
1525-5050
DOI
10.1016/j.yebeh.2026.111303
language
English
LU publication?
yes
id
0bb454a1-db5f-41f1-ba39-0edbf318e03b
date added to LUP
2026-09-29 20:33:19
date last changed
2026-09-30 07:55:29
@article{0bb454a1-db5f-41f1-ba39-0edbf318e03b,
  abstract     = {{Introduction Tuberous sclerosis complex (TSC) is a rare genetic disorder with a high prevalence of drug-resistant epilepsy. In such cases, epilepsy surgery may render 60% of suitable candidates seizure-free. Although seizure reduction may contribute to improvements in cognitive or language skills, little is known about neurobehavioral changes overall. Methods This retrospective single-center study included children with TSC who underwent epilepsy surgery and had ≥ 12 months of follow-up data. We collected pre- and postoperative neurobehavioral data, structured around the TSC-Associated Neuropsychiatric Disorders (TAND) questionnaire, from medical and neuropsychological records. Surgical outcomes were dichotomized as seizure-free or not seizure-free. Results Of 21 surgeries, 13 (62%) achieved complete seizure freedom, and 15 (71%) achieved seizure freedom from the targeted seizure type. The most prevalent TAND problems at baseline were in language (n = 19), motor skills (n = 17), and attention (n = 13). After surgery, 18 (86%) showed improvement in at least one cluster, most often language (n = 12) or attention (n = 7). Postoperative behavioral worsening in at least one cluster was observed in 13 (62%), most often in repetitive behaviors (n = 5) and tantrums (n = 4). Surgical outcomes were unrelated to the improvement or worsening of symptoms. Conclusion Neurobehavioral improvement was often observed following epilepsy surgery in TSC, with seizure outcomes unrelated to neurobehavioral outcomes. However, some worsening of behavior was observed. Many TAND items were not routinely documented in the clinical records, underscoring the need for a more structured, prospective approach to neuropsychiatric comorbidity assessment in TSC.}},
  author       = {{Pearsson, Kevin and Selby, Mikaela and Broekhuizen, Ellen and Pijs, Daan and Stone, Scellig and Sahin, Mustafa and Reilly, Colin and Ailion, Alyssa and Peters, Jurriaan}},
  issn         = {{1525-5050}},
  keywords     = {{Drug-resistant epilepsy; Epilepsy surgery; Pediatric neurosurgery; TSC-associated neuropsychiatric disorders; Tuberous sclerosis complex}},
  language     = {{eng}},
  pages        = {{1--9}},
  publisher    = {{Elsevier}},
  series       = {{Epilepsy & Behavior}},
  title        = {{Neurobehavioral outcomes following epilepsy surgery in tuberous sclerosis complex: A retrospective study}},
  url          = {{http://dx.doi.org/10.1016/j.yebeh.2026.111303}},
  doi          = {{10.1016/j.yebeh.2026.111303}},
  volume       = {{185}},
  year         = {{2026}},
}