Understanding and overcoming delays to pediatric epilepsy surgery: a scoping review

Epilepsy surgery can improve developmental and seizure outcomes in children with drug-resistant epilepsy (DRE), yet substantial delays to surgery persist. This scoping review synthesizes the barriers to pediatric epilepsy surgery and evaluates interventions aimed at overcoming these delays in the pediatric population.

A comprehensive review of PubMed, Scopus, Web of Science, and Embase databases was conducted following PRISMA-ScR guidelines. Studies were analyzed using thematic synthesis across three domains: physician, caregiver, and systemic barriers. Reported interventions were categorized by barrier type.

Of 1126 articles screened, 58 met inclusion criteria. Delays to surgical referral and treatment arise from interwoven physician, caregiver, and systemic barriers. Physicians show wide variability in defining DRE and initiating surgical referrals, with discomfort and skepticism persisting despite evidence of improved pediatric surgical outcomes. Caregivers often perceive surgery as a last resort and report inadequate education, support, and trust in providers. Systemic barriers such as limited access to specialized centers, insurance constraints, and racial disparities further compound delays. Interventions targeting these barriers remain limited but show promise. Automated referral alerts have tripled surgical referrals in select studies. Multidisciplinary team (MDT) models foster provider confidence and reduce diagnostic ambiguity, while also increasing caregiver trust in the care process. In addition, educational interventions improve caregiver and patient knowledge and foster more favorable attitudes toward surgery. Decision coaches help clarify caregiver goals, reduce decisional uncertainty, and improve preparedness. Strategic collaborations between surgical centers and referring hospitals significantly increase referrals. Telehealth expands access to preoperative evaluations, and epilepsy surgery nurse managers can help streamline diagnostic workups and care coordination.

Delays to pediatric epilepsy surgery reflect a complex convergence of physician, caregiver, and systemic barriers. Promising interventions-such as clinical decision-support tools, MDTs, decision coaching, educational programs, inter-institutional partnerships, telehealth, and care coordinators-demonstrate potential to reduce delays. Pediatric-focused implementation and expansion of these strategies are needed to ensure timely, equitable access to epilepsy surgery for children with DRE.