Authors :
Presenting Author: Peter Hadar, MD, MS – Massachusetts General Hospital
Lamees Alhallaq, MD – Neurology – Massachusetts General Hospital; Julianne Brooks, MPH – Neurology – Massachusetts General Hospital; Maria Donahue, MD – Neurology – Massachusetts General Hospital; Kathleen Farrell, MB BCh, BAO – Mission Outcomes Team – Epilepsy Foundation; Brandy Fureman, PhD – Mission Outcomes Team – Epilepsy Foundation; Jeffrey Buchhalter, MD, PhD – Pediatrics – Cumming School of Medicine, University of Calgary; Nicholas Abend, MD, MSCE – Neurology – Children's Hospital of Philadelphia; Susan Herman, MD – Neurology – Barrow Neurological Institute; Jacob Pellinen, MD – Neurology – University of Colorado School of Medicine; David Ficker, MD – Neurology – UC Gardner Neuroscience Institute; Shawna Benard, MD – Neurology – Keck Medicine of University of Southern California; William Trescher, MD – Neurology – Penn State Hershey; Deepa Sirsi, MD – Neurology – UT Southwestern; Lidia Moura, MD, MPH, PhD – Neurology – Massachusetts General Hospital; Sahar Zafar, MD, MBBS – Neurology – Massachusetts General Hospital
Rationale:
The pursuit of outcome quantification is increasingly necessary in neurology. In the epilepsy field, understanding and quantifying seizure frequency is prognostically important in determining the effectiveness of medication and surgical interventions. However, as most reporting is retrospective, discrepancies, inaccuracies, and biases arise in seizure quantification, both by patients and providers. We investigated the differences between patient and provider-reported seizure frequency and further assessed how different patient level characteristics impacted these discrepancies.
Methods: We conducted a cross-sectional analysis of patients with epilepsy presenting to two pediatric and four adult sites across the United States as part of the Epilepsy Learning Healthcare Systems (ELHS), a national quality improvement initiative, from December 2018 through May 2023. Patient demographics (self-reported race and ethnicity, age <1 8 or > 65, sex, gender identity, sexual orientation) and clinical data (seizure frequency and ILAE classification) were collected. Descriptive statistics were performed, including Chi-Square or Fisher exact tests for bivariate analysis. We also assessed directionality of the provider-patient discrepancy across demographic groups.
Results: The cohort consisted of 906 individuals; of these, 53.9% were female, 6.5% identified as Hispanic, 4.4% identified as gender queer, 10.0% identified as LGBQIA, and 16.8% identified as minority race. A discrepancy was observed between patient and provider-reported seizure frequency in 29.0% of patients; the rate of discrepancy was significantly higher for patients who were Hispanic, gender queer, pediatric (age < 18), or elderly (age > 65). A further sub-analysis was performed on cases with a discrepancy to determine the direction of the provider - patient difference in categorical seizure frequency reporting. This indicated that providers reported fewer seizures than patients did (underreported) when patients identified as minority race or were of pediatric age.
Conclusions: Discrepancies exist in patient and provider-reported seizure frequency. This is particularly prevalent among patients who are Hispanic, genderqueer, or at the extremes of age. In addition to this reporting discrepancy, there was a statistically significant underreporting by providers relative to patients of seizure frequency when patients identified as minority race or were of pediatric age. These seizure frequency reporting discrepancies, especially provider underreporting, may contribute to disparities in care experienced by these demographic groups, including differential access to appropriate medication options and surgical referral; future investigations will focus on understanding the underlying factors contributing to these reporting discrepancies to help ensure equitable care and improve healthcare outcomes for underserved populations.
Funding: With support from the Epilepsy Learning Healthcare System (ELHS) and the Epilepsy Foundation