This research meeting is held in collaboration with the Pediatric Epilepsy Research Consortium (PERC) through its Surgery, Neuromodulation, and Neuropsychology Special Interest Groups and is not part of the family conference. Attendance is by invitation only. The main goal of this meeting is to address the effects of epilepsy surgeries that are not intended or expected to result in seizure freedom, on daily function and quality of life. We will use parent stories to frame priorities, choose one retrospective multicenter study that is practical for PERC sites, and agree on a small set of functional outcome assessments that retrospective chart review can support. The study should be able to answer questions families actually ask (“Will my child think more clearly? Will school be easier? Will we be in the hospital less?”) and produce plain language summaries clinics can use in real‑world counseling.
A secondary goal of the meeting is to propose that our organizations retire the ‘palliative’ label in the epilepsy surgery context and instead describe these procedures using a patient‑centered framework. Specifically, we will recommend language that presents corpus callosotomy, VNS, RNS, DBS, and non-curative resections and LITT as treatments that change the course of epilepsy and have the potential to make seizures less harmful over time, rather than as ‘palliative’ surgeries. This policy recommendation would guide how clinicians talk with families, how pathways are described in guidelines, and how future research characterizes surgeries not intended to result in seizure freedom.
The meeting will focus on family experience and functional outcomes when seizures continue, and design one retrospective multi-center study that quantifies functional benefits and seizure outcomes classifications. Outputs will include a small, shared set of functional outcome assessments that charts can support.
This work advances the NIH’s
Epilepsy Research Benchmarks – Area IV: IV.A: Understand and limit the impact of epilepsy on non‑seizure outcomes such as neurodevelopment, mental health, cognition, health‑related quality of life, and other functions. IV.B: Understand and limit the impact of anti‑seizure treatments (medical, surgical, neuromodulation) on those same non‑seizure outcomes.
