Authors :
Presenting Author: Maria Planchart Ferretto, MD – Boston Children's Hospital
Christina Briscoe, MD, EdM – Boston Children's Hospital
Laura Kirkpatrick, MD – University of Pittsburgh
Rebecca Garcia-Sosa, MD – Lurie Children’s Hospital
Christopher Beatty, MD, MAS – Division of Neurology, Department of Pediatrics, Nationwide Children’s Hospital and The Ohio State University College of Medicine, Columbus, OH
Avantika Singh, MD – Medical College of Wisconsin
Joanna Garcia Pierce, MD – Lurie Children’s Hospital
Alisa Khan, MD – Boston Children’s Hospital
Alyssa Coffin, MD – Boston Children’s Hospital
Marcella Luercio, MD – Boston Children’s Hospital
Bianca Quiñones-Pérez, MD – Boston Children’s Hospital
Alcy Torres, MD, FAAP – Boston Medical Center
Tobias Loddenkemper, MD – Boston Children's Hospital, 300 Longwood Ave, Boston, MA 02115, USA
Qian-Zhou JoJo Yang, MD – University of North Carolina at Chapel Hill
Gretchen Berrios-Siervo, PsyD, ABPP-CN – University of Colorado School of Medicine
Karen Skjei, MD – El Paso Center for Seizures and Epilepsy
Rationale:
Language is a critical but understudied social determinant of health in pediatric epilepsy care (Skjei 2024; Peng 2025). While most research has focused on emergency and inpatient settings, outpatient care presents communication challenges. We aimed to examine institutional policies, interpreter availability, translated resources, and clinician perceptions of language equity in outpatient pediatric epilepsy care across the U.S.Methods:
We conducted a multicenter, cross-sectional survey analysis of clinicians caring for pediatric epilepsy patients through the Pediatric Epilepsy Research Consortium (PERC) from 10/14/2024 to 12/31/24. A REDCap survey was developed iteratively through expert review consensus, pilot tests, and cognitive interviews. The final survey includes 36 multiple-choice and free-text questions. Descriptive statistics were calculated in STATA. To ensure equal institutional representation, we applied survey weighting to account for variability in the number of responses per center. Free-text responses were analyzed using deductive qualitative content analysis by two independent coders based on the Consolidated Framework for Implementation Research (CFIR). Coders resolved discrepancies by consensus.Results:
Clinicians from 40 unique PERC institutions (53% response rate) from all five U.S. regions completed the survey, with 100 total respondents. While 81% (n=32) of institutions had in-person interpreter access (95% CI 68%-89%), only 37% of clinicians (n=31) reported routinely having them interpret (Table 1). Over half (59%) of clinicians reported using non-professional interpreters. Incentives for bilingual providers were not available at 72% of institutions (95% CI 59%-81%), and 89% (95% CI 79%-94%) did not provide additional time for outpatient visits requiring interpretation. Essential written materials, such as seizure action plans, were only consistently available in most languages at 15% of centers (95% CI 8%-27%). Key barriers varied (Figure 1). Themes from the qualitative analysis included clinician moral distress about the inability to provide equitable care, mistrust in the interpretation quality, and the need for additional institutional support for patient families who use LOE (language other than English).Conclusions:
Clinicians who treat children with epilepsy across the U.S. perceive gaps in outpatient care for families who use LOE. There was wide variation in institutional practices and limited awareness of available resources. Further research is needed to identify barriers and facilitators to implementing best practices in care for this population. Standardized institutional policies, strengthened bilingual resources such as seizure action plans, incentives for language-concordant care, and navigation supports like community health workers emerged as key strategies. These findings highlight the need for targeted, equity-focused interventions and will guide the subsequent efforts of the PERC Health Equity Special Interest Group.Funding:
This work was funded by the Child for Neurology Foundation, Harvard Medical School Office of Diversity, Equity, Inclusion, and Community Partnership, and Epilepsy Foundation of New England.