Improving Care for Patients with Lennox-Gastaut Syndrome: Qualitative Study of Parent Perspectives

Introduction: Lennox-Gastaut Syndrome (LGS) is a severe, treatment-resistant form of pediatric epileptic encephalopathy associated with a high morbidity and mortality. Epilepsy surgery, including lobar resection, hemispherectomy, and vagus nerve stimulation have been demonstrated to be effective treatments for LGS patients. However, the heterogenous presentation of LGS, and similarities with other childhood epileptic syndromes, make it difficult to diagnose. While this is thought to limit patient access to treatment and increase caregiver burden, no studies have investigated the impact on LGS populations. In this study, we characterized barriers to and potential areas for improvement of care for LGS patients.

Methods: Parents or caregivers of children with LGS attended a focus group session at the 9th International Family and Professional Conference hosted by the LGS Foundation. Focus groups were facilitated by healthcare professionals and explored a range of concepts including diagnosis, access to LGS information, and improvement of care.

Results: Nineteen LGS parents/caregivers participated. Across the three focus groups, thematic analysis revealed three themes (with sub-themes) related to the care of LGS patients: (1) accessibility (limited access to diagnosis, lack of physician knowledge regarding LGS, geographical barriers limit access to treatment) (2) improvement in transitional care (LGS families struggle to find knowledgeable adult providers, need developmentally appropriate adult care), and (3) improvement in care coordination (care coordination results in high caregiver burden, healthcare system integration is needed).

Conclusion : LGS families face several barriers to accessing treatment, including limited access to diagnosis due to lack of physician knowledge about the condition. These barriers can limit the efficacy of surgical treatments. Therefore, neurosurgeon involvement in addressing these barriers is crucial to improve access to care. Increased neurosurgeon involvement in interdisciplinary care and care coordination across pediatric and adult realms is needed to ensure access to equitable and effective care.