Authors :
Presenting Author: Evelyn Pan, BS, MPH – Children's Hospital of Pittsburgh at UPMC
Steven Wisniewski, PhD – Epidemiology Data Center – University of Pittsburgh; Taylor Abel, MD – UPMC Children's Hospital of Pittsburgh
Rationale:
The optimal strategies for treating seizures, such as the drop attack seizures characteristic of Lennox-Gastaut syndrome (LGS), are currently poorly understood. The multitude of treatment options present a challenge to physicians and many clinically relevant questions cannot be adequately answered with double-blind randomized controlled studies. In the presence of this knowledge gap, a survey was designed to collect patient feedback on their preferred treatment of drop attacks and LGS. This community-based survey assessed self-reported preferences and outcome expectations for vagus nerve stimulation (VNS) and corpus callosotomy (CC) surgeries in the treatment of drop attacks and LGS. Respondents’ willingness to be or have their child be randomized into either surgical intervention for a future clinical trial was also assessed.
Methods: An online survey was distributed via Research Electronic Data Capture (REDCap). The survey was advertised in the community through social media, email lists, and websites. Survey responses were collected between 11/14/2022 and 1/31/2023. Respondents included parents and caretakers of individuals who experience drop attack seizures characteristic of LGS as well as individuals who have been diagnosed with LGS or experience drop attack seizures. Qualitative comments explaining the rationale for the refusal to surgically randomize were also collected from respondents.
Results: There were N=327 responses, of which 316 were caretakers or parents of individuals with drop attacks and individuals who experience drop attack seizures themselves. Of these, 260 respondents answered the surgical intervention preference and outcome expectation questions which were included in the final analysis, while 56 had missing responses and were excluded from the survey sample for this analysis. Survey respondents reported an average minimum acceptable drop attack reduction rate of 74.7% following CC and 55.9% following VNS.
Conclusions: The survey results indicate a low willingness to be randomly assigned to receive either VNS or corpus callosotomy for a future clinical trial, with only 21.3% (N=50) of respondents reporting that they would agree to be randomized into a surgical intervention. Our findings guide surgical approaches for clinicians to consider in order to achieve best practices. Further study is required to determine the comparative effectiveness between these two procedures and patient preferences must be considered when designing future research.
Funding: Children’s Hospital of Pittsburgh Foundation Fund