Variability in recommending epilepsy surgery across Level
IV
epilepsy centers in the United States
Avery R. Caraway, Nancy A. McNamara, Andrew T. Knox, Debopam Samanta, Steven M. Wolf, Edward J. Novotny, Adam P. Ostendorf, Krista L. Eschbach, Dewi F. Depositario‐Cabacar, Cemal Karakas, Pilar D. Pichon, Kurtis I. Auguste, Danilo R. Bernardo, Pradeep K. Javarayee, Rani K. Singh, Michael A. Ciliberto, Shilpa B. Reddy, Kristen H. Arredondo, Ahmad Marashly, Fernando N. Galan, Dallas M. Armstrong, Janelle L. Wagner, Lily C. Wong‐Kisiel, Jeffrey B. Bolton, Jenny J. Lin, Zachary M. Grinspan, Taylor J. Abel, Jason Coryell, M. Scott Perry, Abstract
Objective
Surgery is an effective, yet underutilized treatment for children with drug‐resistant epilepsy. Although predictors of surgical outcomes are well described, the decision to recommend surgery varies by institution. We aim to evaluate the rates of not recommending surgery, identify associated patient characteristics, and quantify variability across centers.
Methods
We queried the Pediatric Epilepsy Research Consortium Surgery database, a prospective multicenter cohort of children (0–18 years) undergoing initial evaluation for epilepsy surgery. Patients with documented surgical decisions were included. Demographic, clinical, and presurgical evaluation variables were compared by surgical recommendation status. Logistic regression identified factors associated with not recommending surgery. Mixed‐effects models quantified between‐center variability.
Results
Among 2480 patients across 29 centers, 532 (21%) were not recommended epilepsy surgery (median center rate 17%, interquartile range [IQR] 10%–28%). After accounting for patient characteristics associated with surgical candidacy, substantial variation in decision‐making remained across centers, with a median twofold difference in the odds of not recommending surgery between otherwise similar patients evaluated at different institutions (Median Odds Ratio = 2.25; Intraclass Correlation Coefficient = .18). The clinical characteristics most strongly associated with not recommending surgery included monthly or less frequent seizures (odds ratio [OR] 2.17, 95% confidence interval [CI] 1.75–2.69), non‐structural etiology (OR 2.02, 95% CI 1.56–2.61), and taking ≤2 anti‐seizure medications (ASMs) (OR 1.67, 95% CI 1.34–2.08, all p 's < .01). These characteristics showed minimal clustering across centers (ICCs < .05).
Significance
One in five children evaluated for epilepsy surgery are not recommended to pursue surgical treatment. Although clinical factors influence decision‐making, they do not explain the substantial variation in recommendations across pediatric epilepsy centers. Similar children evaluated at different institutions had significant differences in the odds of not being recommended surgery, suggesting that institutional decision‐making contributes importantly to surgical candidacy.