Rationale:
Long-term video-EEG (LT-VEEG) is essential for seizure/spell characterization and presurgical evaluation in epilepsy, but is underutilized. Patient-centered outcomes (e.g., attitudes and perceptions) about LT-VEEG are not routinely queried or are underreported. These factors may impact patient preparedness to undergo LT-VEEG, confidence in diagnosis, and compliance with treatment. Using patient-centered outcomes to create interventions targeting educational gaps may increase LT-VEEG utilization.
Objectives:
1. To assess how patient attitudes and perceptions evolve during Long-term video-EEG (LT-VEEG) at a comprehensive epilepsy center.
2.To identify gaps in patient education about LT-VEEG and effective interventions to address these gaps.
Methods:
A single-center cross-sectional study recruited patients undergoing LT-VEEG via convenience sampling between 7/29/2024-12/31/2024. Baseline and post-admission surveys, containing both qualitative and semi-quantitative assessments, were administered via RedCap. Adults ≥ 18 years capable of providing informed consent were eligible. Descriptive statistics and thematic analysis were performed on responses.
Results:
44 unique patients participated; demographics in Table 1. 32/44 (72.73%) took baseline survey, 23/44 (52.27%) post-admission survey, and 11/44 (25%) both. At baseline: 100% of respondents reported knowing the reason and need for testing while 90.91% reported feeling prepared. Treatment (50%) was most reported testing indication followed by diagnosis (40.91%). 68.2% of participants cited test duration and 50% cited cost as barriers to LTVEEG. At terminal survey: 53.85% of participants reported a change in their understanding of LT-VEEG testing from baseline. Diagnosis was most reported testing indication (53.84%) followed by treatment (34.62%). 88.46% of respondents felt testing was necessary with only 80.77% being satisfied with the results and 69.23% reporting testing went as expected. 73.08% of participants agreed educational materials would help prepare others for this testing including short videos (57.70%), pamplets (23.08%), or other formats (11.54%). Main themes of responses included: Preparation and Information, Personal Comfort and Entertainment, Accommodations, Communication, Testing Experience/Tolerance, and Privacy and Mobility. A minority of participants (4.5-7.7%) wanted doctors to have additional information about the test on both surveysConclusions:
The attitudes and perceptions of participants towards LT-VEEG testing changed from baseline to post-admission. Between 20-30% of participants reported that testing did not meet their expectations or expressed dissatisfaction with the results, indicating that pre-admission counseling may have been inadequate. Small sample size and a selection bias towards a predominantly White female cohort limit the external validity and the ability to conduct sociodemographic subgroup analyses. Participants suggested improving their experiences through better preparation regarding testing logistics, procedures, and comfort measures. A majority preferred short videos as a potential intervention. Videos addressing high-frequency gaps in knowledge could be beneficial.Funding: NA