Practice Patterns and Care Gaps in Lennox-Gastaut Syndrome: A Call for Action.

INTRODUCTION

Lennox-Gastaut syndrome (LGS) is characterized by drug-resistant seizures, cognitive impairment, and significant comorbidities, requiring lifelong care. Despite therapeutic advances, real-world management and system-level barriers in Canada are not well defined. A national survey was conducted to examine Canadian practices in LGS diagnostic approaches, therapies, comorbidity management, counseling practices, and transition services, aiming to identify gaps and guide quality improvement initiatives.

METHODS

Following a literature review, a 41-item web-based survey was developed and distributed to neurologists and allied health workers via the Canadian League Against Epilepsy and the Canadian Neurological Sciences Federation.

RESULTS

Among 111 respondents (77% physicians; 79% academic practice), diagnostic confidence was limited: 46% believed LGS is both over- and underdiagnosed, and only 5% felt most patients are accurately identified. Adult diagnosis was considered particularly challenging (46%). Genetic testing for unknown etiologies was routine for 67% and, however, was more common among pediatric than adult neurologists (81% vs 41%, p < 0.001). Valproic acid (98%), clobazam (82%), and lamotrigine (75%) were the most common first-line anti-seizure medications (ASMs), yet 67% rated available treatments as inadequate. Reported treatment barriers included limited ASM efficacy (68%), adverse effects (38%), and comorbidity management challenges (37%). Corpus callosotomy was perceived as underutilized (71% overall), suggesting access disparities. Time and resource limitations hindered comorbidity screening. Only 23% reported access to formal transition programs.

CONCLUSIONS

Significant gaps remain in the diagnosis and management of LGS in Canada, particularly in treatment, comorbidity screening, and transition care. National guidelines, standardized pathways, and improved access to multidisciplinary services are needed to enhance outcomes.